Podcast appearances and mentions of kira dineen

In this episode of It Happened To Me, we continue our conversation with Dr. David Traster, a clinical neurologist and educator who works with patients experiencing complex neurological conditions. In Part 1, Dr. Traster introduced clinical neurology, shared his personal experience with chronic illness and delayed diagnosis, and explained how neuroplasticity can help the brain adapt and recover. In Part 2, the conversation expands into how the nervous system affects far more than movement, including pain, digestion, heart rate, fatigue, balance, vision, and everyday functioning. Dr. Traster explains how different areas of the brain and nervous system influence the body, and why neurological symptoms do not always appear clearly on imaging or lab results. He discusses how patients can feel dismissed when their symptoms are real but difficult to measure, and offers practical insight into how people can advocate for themselves while seeking a diagnosis and appropriate care. Cathy and Dr. Traster also explore the connection between balance, vision, the inner ear, and spatial orientation. Using clear examples, Dr. Traster explains how the brain integrates information from the eyes, body, and vestibular system, and how dizziness, vertigo, motion sensitivity, or imbalance can occur when those systems are not communicating properly. The episode also looks at neurological recovery across the lifespan. Dr. Traster emphasizes that people are never “too old” or “too sick” to improve brain function, although each person's recovery depends on their condition, limitations, and consistency. He explains the importance of repetition and targeted exercise in strengthening brain pathways, and why practice can help make functional improvements more lasting. This conversation closes with a hopeful look at the future of neurological recovery, including the role of technology, AI, advanced imaging, and new tools that may help us better understand and support the brain. In This Episode, We Discuss: How the nervous system affects pain, digestion, heart rate, fatigue, and emotions Why some neurological symptoms do not show up on MRIs, CT scans, or lab work The challenges patients face when symptoms are dismissed or misunderstood How to advocate for yourself when something feels wrong Why diagnosis matters before treatment can be effective How balance, vision, the inner ear, and body awareness work together What can cause dizziness, vertigo, motion sensitivity, and imbalance How people with vision loss or visual limitations can strengthen other systems Why neurological recovery is possible at every age How exercise, nutrition, social connection, and learning support brain health The role of repetition and targeted exercises in retraining the nervous system Common misconceptions about the brain's ability to heal Why technology may transform the future of neurological care About Dr. David Traster Dr. David Traster is a clinical neurologist and educator with nearly two decades of experience working with patients experiencing complex neurological conditions. His background as an athlete and personal trainer, along with his own experience navigating injury and chronic health challenges, shaped his approach to neurological recovery and rehabilitation. Dr. Traster has advanced training in concussion, dizziness and vertigo, movement disorders, autonomic nervous system conditions, and childhood developmental disorders. His work focuses on helping patients improve function through neurorehabilitation, targeted exercises, and individualized care. Listen to Part 1 Listen to Part 1 of this conversation on Episode 85 of It Happened To Me to hear Dr. Traster explain clinical neurology, his own experience with delayed diagnosis and Lyme disease, concussion recovery, targeted brain rehabilitation, and neuroplasticity. Connect With Us   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

In this episode, we discuss the complexities of predictive genetic testing in Amyotrophic Lateral Sclerosis (ALS) from Dr. Jade Howard's recent study. Learn how it impacts decision-making and what it means for families.   Article: “Predictive genetic testing in amyotrophic lateral sclerosis (ALS): Experiences of decision-making and engagement with UK genetic counseling services”   In this episode we discuss: - The decision-making process surrounding predictive testing - Navigating family dynamics and personal goals - The uncertainty that comes with genetic risks - The need for tailored communication and ongoing support after testing   Guest Bio: Dr Jade Howard is a postdoctoral researcher at Sheffield Institute for Translational Neuroscience, University of Sheffield, UK. Her research focuses on genetic testing in motor neuron disease (MND/ALS), and the development of interventions to help families navigate decisions around testing and the disclosure of results.   Resources: - This research is being led by PI Dr Alisdair McNeill, with the support of the study team Prof Hilary Bekker and Prof Chris McDermott, and a project steering committee. The team are grateful to The MND Association for funding this work and all the participants who took part. - If you are interested in the decision aids discussed in this podcast, they can be found here: https://mymndgenetest.shef.ac.uk/   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this episode of It Happened To Me, we explore clinical neurology, how the brain and nervous system function, what happens when things go wrong, and how recovery and adaptation are possible even after injury or chronic neurological challenges. Our guest is Dr. David Traster, a clinical neurologist and educator who has spent nearly two decades working with patients experiencing complex neurological conditions. His background as an athlete and personal trainer, combined with his own experiences navigating injury and chronic health issues, shaped his interest in helping people improve function through neurological recovery. Dr. Traster has advanced training in concussion, dizziness and vertigo, movement disorders, autonomic nervous system conditions, and childhood developmental disorders. His work focuses on helping patients improve function through neurorehabilitation and targeted exercises, without relying solely on drugs or surgery. In Part 1 of this conversation, Dr. Traster explains what clinical neurology really means and how it differs from the traditional view of neurology as diagnosis, medication, or surgery alone. He shares his own experience as a high-level basketball player whose life changed after a surgery led to years of unexplained symptoms, eventually resulting in a Lyme disease diagnosis. That personal journey shaped how he listens to patients whose symptoms do not fit neatly into a diagnosis. The conversation also explores how the brain responds to injury, including concussion and traumatic brain injury. Dr. Traster explains why recovery often requires more than rest and time, and how targeted exercises involving vision, balance, eye movement, vestibular rehabilitation, and cognitive therapy can help retrain specific brain pathways. Cathy and Dr. Traster also discuss how this approach may apply to patients living with rare or genetic conditions. While neurorehabilitation may not cure an underlying condition, Dr. Traster explains that improving function, balance, movement, and quality of life can still be meaningful and powerful for patients. Dr. Traster also provides a clear explanation of neuroplasticity, the brain's ability to change, strengthen, and reorganize through repeated activity. Dr. Traster breaks down why “brain cells that fire together wire together,” and how learning, movement, repetition, and targeted practice can support healing and adaptation. In This Episode, We Discuss: What clinical neurology is and how it differs from traditional neurology Why the brain may need functional and physics-based approaches, not only chemical interventions Dr. Traster's personal experience with chronic illness, delayed diagnosis, and Lyme disease How being dismissed medically shaped his empathy for patients Why neurological symptoms like dizziness, brain fog, and balance issues can be misunderstood How concussion recovery can involve targeted brain rehabilitation The role of vision, balance, vestibular rehab, eye movement therapy, and cognitive exercises How neurorehabilitation may support patients with genetic or rare conditions Why function and quality of life matter, even when a condition cannot be cured What neuroplasticity means in simple terms How learning, repetition, and practice help strengthen brain connections About Dr. David Traster Dr. David Traster is a clinical neurologist and educator with nearly two decades of experience working with patients experiencing complex neurological conditions. His background as an athlete and personal trainer, along with his own experience navigating injury and chronic health challenges, shaped his approach to neurological recovery and rehabilitation. Dr. Traster has advanced training in concussion, dizziness and vertigo, movement disorders, autonomic nervous system conditions, and childhood developmental disorders. His work focuses on helping patients improve function through neurorehabilitation, targeted exercises, and individualized care. Resources  "Sidney Crosby's concussion 10 years later and the NHL's progress since: Yohe" via NY Times  Dr. David Traster's Neurologic Wellness Institute Profile   Learn More Listen to Part 2 for the continuation of this conversation, where Dr. Traster discusses how the nervous system affects pain, digestion, heart rate, fatigue, balance, vision, the inner ear, patient advocacy, and neurological recovery across the lifespan. Connect With Us   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

A sensitive content warning: this episode includes discussion of substance addiction, mental health struggles, suicide attempts, and recovery. If you or someone you know is in immediate danger or at risk of harm, call 911 or go to the nearest emergency room. The 988 Suicide & Crisis Lifeline is available 24/7 in the U.S., call or text 988 to connect with a trained counselor, or use the online chat through the 988 Lifeline. It supports people experiencing suicidal thoughts, emotional distress, mental health crises, and substance use concerns. To honor May being Mental Health Awareness month we invited Drew Motiv to share his story of transformation through addiction, mental health struggles, and surviving suicide attempts, in this episode. Now a motivational speaker and founder of the Divine Family Movement, Drew opens up about the darkest chapters of his life and how he found his way toward healing, self-belief, and purpose. We explore what it truly means to hit rock bottom, the isolation that can come with addiction and recovery, and the difficult work of rebuilding your identity after trauma. Drew reflects on the internal battles he faced, the moments that changed his path, and how he now uses his lived experience to help others feel less alone. Beth and Cathy also talk with Drew about the emotional complexity of recovery, learning to trust yourself again, coping with lingering anxiety and darkness, and turning personal pain into public advocacy. His story is both deeply personal and broadly resonant for anyone navigating mental health challenges, addiction, or the long road back to themselves. In this episode, we discuss: Drew Motiv's journey through addiction and mental health struggles What “rock bottom” looked like in his life Surviving suicide attempts and the emotional aftermath The role of isolation, honesty, and support in recovery Rebuilding trust in yourself after trauma How recovery is not linear Turning painful experiences into purpose-driven advocacy Founding the Divine Family Movement Redefining strength, especially for men facing stigma around vulnerability What Drew wants listeners who are struggling to hear right now If you or someone you know is struggling, please use the resources below.  Drew's Links: Follow Drew Motiv on Instagram @Drew_Motiv divinefamilymovement.com Resources:  Need support? If you or someone you know is in immediate danger, call 911 or go to the nearest emergency room. In the U.S., you can call or text 988 for the Suicide & Crisis Lifeline 24/7. For substance use or mental health treatment referrals, contact SAMHSA's National Helpline at 1-800-662-HELP (4357). For text-based crisis support, text HOME to 741741. Veterans and service members can reach the Veterans Crisis Line by calling 988 and pressing 1 or texting 838255. For non-crisis support and local mental health resources, contact NAMI HelpLine at 1-800-950-NAMI (6264) or text NAMI to 62640.  Connect With Us:    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this episode we are exploring 2 recent Journal of Genetic Counseling articles on the topic of insurance coverage and concerns about genetic discrimination. Segment 1: Cardiovascular genetic counselor decision making about discussing life insurance with patients Guest Bios: Sara Cherny has almost 20 years of experience as a genetic counselor in the Chicagoland area, specializing in cardiovascular genetics for the past decade. Her wide range of experience allows her to provide comprehensive care for patients in the Cardiovascular Genetics Clinic at Ann & Robert H. Lurie Children's Hospital, where she engages in patient care, program development, and research. Her research focuses on trends in cardiovascular genetics, access to genetic services, genetic privacy, and genetic discrimination. She is involved in advocacy work with the Illinois Society of Genetic Professionals (ISGP) and the Pediatric and Congenital Electrophysiology Society (PACES). Sara loves how her work combines science and patient care, and is committed to scientific discovery that both improves patient experience and moves the field forward.  Sarah Jurgensmeyer Langas is a genetic counselor in the Heart Center at the Ann and Robert H. Lurie Children's Hospital of Chicago with a specific focus in congenital heart disease, aortopathies, and Williams syndrome. Sarah is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and enjoys teaching and providing clinical supervision to genetic counseling graduate students and medical students. Sarah is also active in the Illinois Society of Genetic Professionals, currently serving on the Advocacy Committee and previously serving as President in 2024. She was the recipient of the 2023 ACMG Foundation Carolyn Mills Lovell Genetic Counselor Award and is passionate about expansion of genetic services to more patient populations. https://www.instagram.com/luriechildrensheartcenter/ https://www.instagram.com/sara_cherny/   In this segment we discuss: - How life insurance considerations arise in genetic counseling, particularly in cardiovascular genetics, and how conversations vary based on patient knowledge, phenotype, and age. - Findings that genetic counselors are more likely to address life insurance with phenotype-positive and adult patients, while time constraints and clinical context can limit these discussions. - How fear of genetic discrimination impacts patient decision-making, including declining testing, alongside reports of real-world insurance denial. - Challenges in balancing transparency with avoiding unnecessary fear, and the need for better education, standardized guidance, and further research in this space. Segment 2: Understanding GINA through case examples: A guide for US-based genetic counselors   Guest Bios: Anya Prince is the David H. Vernon Professor at the University of Iowa College of Law. Her research and teaching interests focus on genetic discrimination and privacy. @anyaprince.bsky.social   Misha Rashkin, MS, CGC, graduated from the Icahn School of Medicine at Mount Sinai Masters program in genetic counseling in 2013. He is a clinical genetic counselor in oncology at Stanford HealthCare, focusing on hereditary malignant hematology. He chaired the NSGC public policy committee in 2018, and lectures about GINA and privacy to genetic counseling graduate programs.   In this segment we discuss: - Ongoing misconceptions and knowledge gaps about GINA, including what it does and does not protect - The value of case-based learning to clarify complex legal and clinical scenarios in genetic counseling - Nuances in GINA's protections, especially around manifested conditions and evolving genetic technologies - Challenges in counseling patients about discrimination risk, balancing information, and navigating policy gaps like life and disability insurance coverage Resources: Germline genetic testing and privacy concerns in patients with mesothelioma from Genetics in Medicine Genetic Privacy in the US: Insurance and Law Enforcement Use website   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

A panel discussion and interactive Q & A with genetic counseling directors, healthcare consultants, and business case experts. Hosted by Kira Dineen.Dr. Colleen Campbell, Megan Trinkle-Knotts, and Andrea Spencer discuss:Where to begin: connections and resources to get startedHow to craft compelling narrativesThe numbers behind the story: backing up cases with dataBest practices for building strong business casesResources:NSGC Cancer Genetics Business Case ToolkitAn Introduction to the Genetic Counseling Business Case Experience: Learnings from NSGC's First Business Case Summit

Guest Ra-Jon James opens up about his medical emergency that turned his world upside down in an instant. Ra-Jon was diagnosed with Guillain-Barré Syndrome (GBS), a rare neurological condition where the body's immune system attacks the nerves, leading to rapid muscle weakness and, in Ra-Jon's case, sudden paralysis. Ra-Jon first shared his courageous journey on WTKR news in his hometown, and in this episode he joins us to go deeper into the emotional and physical grit required to relearn how to stand, walk, and reclaim his independence. In This Episode, We Discuss: The Sudden Onset: Ra-Jon describes the terrifying moment his body stopped responding and how quickly his symptoms progressed from minor sensations to total loss of movement. Understanding GBS: A look at Guillain-Barré Syndrome in plain English, what it feels like when your nervous system "short-circuits" and the emotional toll of losing autonomy overnight. The Diagnostic Journey: The moment of receiving the diagnosis and why early medical intervention is the most critical factor in recovery. The Road to Recovery: What it's actually like to start physical therapy when even the smallest movements feel impossible. Ra-Jon shares the profound experience of his first steps after paralysis. Mindset & Resilience: How Ra-Jon stayed motivated during the "invisible" days of progress and the role mental strength plays in neurological healing. Support Systems: The importance of community and the specific ways loved ones can provide hope during a long-term recovery. Key Takeaways for Listeners: Recognize the Red Flags: Rapidly spreading weakness or tingling in your extremities should never be ignored. You Are Not Alone: GBS can be an isolating experience; Ra-Jon offers advice for those currently terrified by a new diagnosis. Defining Hope: What healing looks like today and why believing in your body's ability to recover is half the battle. Resources Mentioned: Ra-Jon's WTKR News Feature GBS/CIDP Foundation International Website  About the Guest: Ra-Jon James is a GBS survivor and advocate. After his story went public following a local news appearance, he has dedicated himself to raising awareness about Guillain-Barré Syndrome and providing hope to others facing sudden neurological challenges. Connect With Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

We welcome back Meredith Mangold to shift the conversation from the medical "odyssey" to the human connection. While the first part of Meredith's story (Episode 76) focused on her grueling search for a diagnosis and treatment for ulcerative colitis, POTS, and EDS, in this episode, we explore the essential, and often overlooked, role of support systems. Living with chronic pain at an "8 out of 10" for years isn't just a physical challenge; it's a relational one. Meredith joins hosts Cathy and Beth to discuss what it means to be truly supported when an illness doesn't have an end date. We dive into the nuances of communication, the "guilt of being too much," and the common mistakes well-meaning loved ones make when trying to "fix" a situation that can't be fixed. Whether you are navigating a chronic condition yourself or walking alongside someone who is, this episode offers a masterclass in empathy, validation, and the power of simply being believed.   Episode Topics: Survival vs. Support: Identifying the moments when external support became essential to Meredith's survival during her hardest years of chronic pain. The Anatomy of a Support System: What effective support looks like practically, emotionally, and through "quiet presence." Validation vs. "Fixing": Why well-meaning advice can sometimes feel harmful and how to pivot toward validation and safety. The Burden of Guilt: Navigating the fear of being "too much" for friends and family. Communicating the Invisible: Tips for articulating needs when pain is invisible and chronic. Advocacy without Burnout: How patients can ask for what they need without feeling ashamed. About the Guest: Meredith Mangold, CPXP, is the Founder of Empower Health Strategies and a Certified Patient Experience Professional. After being thrust into the healthcare system at age 20 with severe ulcerative colitis, later followed by diagnoses of POTS and Ehlers-Danlos Syndrome, Meredith dedicated her career to helping healthcare professionals and digital health innovators empathize with the patient journey. She serves on the board of the Chronic Pain Project, is a faculty member for the BiteLabs Fellowship, and collaborates with Johns Hopkins Hospital on patient advocacy initiatives. Resources & Links Mentioned: Meredith's Website: Empower Health Strategies Connect on LinkedIn: Meredith Mangold The Chronic Pain Project: chronicpainproject.org Read Meredith's Story: Emerging from the Fog (Johns Hopkins Medicine) The Chronic Illness Hotline: A text-based peer support line for those navigating chronic illness, pain, and disability. Support their mission or find help at chronicillnesshotline.org. Relevant It Happened To Me Podcast Episodes: #17 Mental Health Help with Social Worker Tamara Blum #25 Pancreatic Cancer with Patient Advocate Leslie Waldman #38 Dr. Tara Zier on Stiff Person Syndrome #66 Not Just Fatigue: Global Advocating for ME/CFS from Bed  #76 When Pain Never Stops: A Survivor's Story of Chronic Pain and Hope (Merdith's First Interview) #77 When Chronic Illness Changes the Tune: A Musician's Journey Through Diabetes and Stroke   Connect With Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Today's episode explores two deeply human dimensions of genetic counseling- how we support families as they process complex genomic information over time and how people make meaning in the face of uncertainty. Both segments discuss how we can support people as they make sense of genetic information in their lives.   Segment 1: Putting control into parents' hands: Parent experiences with a genomic results e-booklet   Guest Bio: Shelin Adam is a Master's trained Genetic Counsellor and Clinical Assistant Professor working at the University of British Columbia Department of Medical Genetics, as well as the Division of Pediatric Neurology at BC Children's Hospital. Her research focus has been the application of new genetic and genomic technology. More specifically, she is interested in understanding the best ways to provide education, decision support and genetic counselling to families being offered genomic sequencing. Shelin has also been involved in looking at issues of equity and access for diverse families who face linguistic, cultural, geographic and economic issues when trying to obtain genetic services.   Key Takeaways: - A genomic results booklet to support parents after pediatric genomic testing. - Findings show improved understanding, communication, and advocacy through a take-home resource. - The study highlights challenges with accessibility, language, and timing of information delivery. - The discussion considers the booklet's role as a partial substitute for genetic counseling and future AI integration.   Segment 2: Exploring the principles of logotherapy in genetic counseling: Enhancing decision-making, adaptation, and justice   Guest Bios: Nour Chanouha, MS, CGC (she/her), emigrated from her home country of Lebanon in 2020 to pursue a career in genetic counseling. Nour graduated from the Northwestern Graduate Program in Genetic Counseling in 2022 and has since been practicing as a genetic counselor in the maternal-fetal medicine and reproductive endocrinology and infertility (IVF) clinics at the University of Iowa Health Care. Nour holds several leadership roles, including serving as a board member of the Arab Society of Genetic Counselors and co-Chair of its Education Committee, as well as co-Chair of the National Society of Genetic Counselors' (NSGC) International SIG Mentorship Program. She is also an active volunteer on multiple committees within the National Society of Genetic Counselors, the American Society for Reproductive Medicine, and the Society for Assisted Reproductive Technology. Nour is actively involved in research, education, and mentorship both within and beyond her institution and has been awarded the NSGC 2025 New Leader Award.   Nour's interest in logotherapy began early in her career. She decided to pursue training in logotherapy as a way to strengthen her counseling skills, enhance cultural competency, and better support patients navigating grief and loss, while also fostering personal and professional growth. When she is not reading Viktor Frankl's writings on the weekend, she enjoys cooking, traveling and volunteering with the Immigrant Welcome Network of Johnson County.   Kendra is a board-certified genetic counselor with 15 years of experience in reproductive genetics. She currently serves as the supervisor of prenatal genetic counseling at University of Iowa Health Care and is the founder of Allay Life, a private practice dedicated to supporting individuals and families navigating unexpected news in pregnancy. Kendra is deeply committed to advancing the practice of genetic counseling through education and mentorship, with a particular focus on the power of therapeutic relationships and counseling skills to enhance patient outcomes. She also provides peer and professional supervision for practicing genetic counselors and graduate students.   Key Takeaways: - This episode explores the use of logotherapy to support meaning-centered genetic counseling. - The discussion highlights how focusing on patient values can guide decision-making and coping. - Logotherapy presented as a practical clinical framework for navigating uncertainty, grief, and complex choices. - The conversation emphasizes its role in promoting patient autonomy, equity, and holistic care. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this episode we explore the complex world of autism spectrum disorder (ASD) in children, featuring practical guidance from Dr. Teresa Lyons, an autism expert, scientist, and parent of a child with autism.    Dr. Theresa Lyons is an international autism educator, Ivy League-trained scientist, and autism parent. Dr. Lyons holds a Ph.D. from Yale and is the founder and CEO of Navigating AWEtism, a platform designed to turn complex autism science into clear, practical guidance for families.   Dr. Lyons' perspective is so powerful. She brings both rigorous scientific training and lived experience as the parent of a child with autism. She's worked with families in more than 21 countries, helping parents move from fear and confusion to confidence and clarity. Key Topics Discussed: What autism is and how it is diagnosed through observation on a spectrum The influence of changing diagnostic criteria and rising awareness Early signs and red flags for autism in infants and toddlers The importance of differentiating misinformation from evidence-based practices How families can prioritize support strategies tailored to their child's strengths The role of collaboration between parents, professionals, and educators Myths about autism, including misconceptions about listening and cognition The connection between vaccines and autism, and how to approach medical decisions Supporting parental mental health and managing emotional regulation Scientific advances in identifying biomarkers and personalized interventions Practical at-home steps for fostering communication and emotional stability   Resources:  Dr. Thersea Lyons' LinkedIn Navigating AWEtism's Website  Navigating AWEtism's YouTube Page Psychology Today  Autism Speaks    Connect With Us: Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Discover how acupuncture, traditionally rooted in Chinese medicine, is transforming fertility care today. Join us as Kirsten Karshmer, a pioneer with over 20 years of experience, shares insights into how integrative practices and AI technology are making fertility treatment more accessible, personalized, and effective.   In This Episode: The science and philosophy behind reproductive acupuncture How acupuncture can enhance ovulation and IVF outcomes The emotional toll of infertility and managing stress Innovations in fertility tech: AI-driven platforms for personalized care Common misconceptions about fertility treatments Practical tips for young girls to foster a healthy relationship with their bodies The importance of shifting narratives: treating overall health, not just infertility   Resources:  Conceivable Technologies  ABORM - a reproductive acupuncture resource  “If Men Could Menstruate" By Gloria Steinem   Connect With Us: Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

A panel discussion and interactive Q & A with the strategists, developers, and researchers behind patient matchmaking initiatives. Hosted by Kira Dineen.Dr. Nara Sobreira, Matthew Osmond, and Dr. Orion Buske discuss:Patient matchmaking as a driver of diagnosisThe technology, interoperability, and structured data powering matchmaking platformsThe future of matchmaking and international collaborationLearn more about the Variant Level Matching Network.Learn more about the Matchmaker Exchange.

In this episode we are talking about uncertainty and risk along with patient preferences for communication. Segment 1: The attitudes of individuals with or at risk of adult-onset genetic conditions on reproductive genetic testing: A systematic review Shanice Allen is a PhD student from the Sheffield Institute for Translational Neuroscience (SITraN) at the University of Sheffield. The aim of her research is exploring the attitudes and experiences of individuals with or at-risk of genetic MND on reproductive genetic testing, and explore how and if clinicians discuss these options with these individuals. This will help us identify any barriers to accessing reproductive services. LinkedIn: https://www.linkedin.com/in/shanice-allen-9a89661a5/   In this segment we discuss: - The attitudes toward reproductive genetic testing in adult-onset genetic conditions. - Experiential knowledge and perceived disease severity in shaping reproductive decision-making. - Ethical themes including guilt, eugenics, and concerns about pregnancy termination. - Findings supporting more tailored, longitudinal genetic counseling approaches.   Segment 2: Assessing patient communication preferences for reclassified variants of uncertain significance in a general genetics clinic Eden Brush, MS, CGC is a pediatric and inpatient genetic counselor in the Division of Clinical Genetics at Columbia University Irving Medical Center. She completed her graduate training at Columbia University as part of the class of 2024. She is passionate about rare disease advocacy, narrative medicine, and disability justice.   In this segment we discuss: - Patient communication preferences for reclassified variants of uncertain significance (VUS) and patient-driven practice insights - Factors that emphasize the utility of shared responsibility, the need for standardized recontact systems, and the importance of equity-focused implementation strategies. - How VUS reclassification type impacted patient-preferred disclosure methods.    Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this episode of It Happened To Me, we share a story that underscores how quickly life can change, even when everything seems perfectly healthy.   Our guest, Kathi Lopez, was a retired business owner who felt active, well, and thriving when she suddenly lost vision in one eye. What began as a frightening visual disturbance quickly escalated into a medical emergency and led to a diagnosis of Giant Cell Arteritis (GCA), a serious inflammatory condition that can cause permanent vision loss if not treated immediately. Kathi was also diagnosed with Polymyalgia Rheumatica (PMR), a related autoimmune disease that causes widespread pain, stiffness, and fatigue.   Kathi has permanently lost vision in her right eye, but she has not lost her voice. In this powerful conversation, she shares what it's like to go from “healthy” to navigating chronic autoimmune illness, how quickly symptoms can be missed or dismissed, and why awareness of GCA can be life- and vision-saving.   This episode is an important reminder that listening to your body, and acting quickly, can make all the difference.   In This Episode, We Discuss: The moment Kathi first noticed something was wrong with her vision Early warning signs of Giant Cell Arteritis, including headaches, jaw pain, fatigue, and body aches How rapidly GCA can progress from subtle symptoms to permanent vision loss Receiving a life-altering diagnosis and processing irreversible vision loss The emotional, psychological, and physical impact of losing sight in one eye Adapting to monocular vision and changes in daily independence Living with both Giant Cell Arteritis and Polymyalgia Rheumatica Treatment approaches and how Kathi's body responded Where the healthcare system succeeds, and where it can fail patients with rare autoimmune diseases Advice for newly diagnosed patients and what Kathi wishes providers understood A message for anyone who believes, “This could never happen to me” Resources Shared by Kathi Kathi wanted to share the following practical, evidence-informed strategies for adapting to vision loss in one eye. These resources do not replace medical care but may help support rehabilitation and daily functioning.   Structured Low-Vision Rehabilitation Work with a Certified Vision Rehabilitation Therapist (CVRT) or low-vision occupational therapist Learn techniques for reading, mobility, depth perception, and hand-eye coordination Eccentric viewing training may help maximize use of stronger retinal areas Monocular Vision Therapy Exercises (Performed with the affected eye covered) Monocular push-ups for focus and accommodation Near-far focusing to improve visual flexibility Brock string or Hart chart exercises for eye movement and coordination Figure-8 eye tracing and directional eye glides Adaptive Skills Training Tossing and catching a ball to improve spatial judgment Motion-parallax head movements to aid depth perception Practicing scanning toward the blind side when walking or navigating spaces Assistive Tools Enhanced lighting, contrast markings, magnifiers, and large print Electronic aids such as CCTVs or adaptive visual technology Expectations & Consistency Adaptation often takes 6–9 months Daily practice (10–20 minutes per exercise) is most effective Patience and self-compassion are essential Important: Always consult your ophthalmologist or low-vision specialist before starting any new therapy, especially after GCA.    Connect With Us Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

We are talking about submitting and publishing manuscripts in the Journal of Genetic Counseling! J9 Austin, the Editor-in-Chief, sits down to explain the process of review, tips for submitting and editing, and answers listener questions.   In this episode we discuss: - A bonus episode with the Journal of Genetic Counseling editor-in-chief on why and how to publish research. - How to choose a journal, write clearly, and navigate submission and peer review. - What reviewers and editors look for and how to respond to feedback effectively. - Support and resources for students and early-career authors aiming to publish.   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this episode of It Happened To Me, we share a powerful story of resilience, creativity, and determination in the face of serious health challenges. We're honored to welcome Carolyn Routh, an award-winning musician, entrepreneur, and front-woman of the acclaimed bluegrass band Nu-Blu. With more than two decades on the road, multiple Billboard Top Ten albums, and appearances on platforms like CBS Sunday Morning, Carolyn has built an extraordinary career in music. What many don't see is the parallel journey she's been navigating behind the scenes—living with Type I diabetes and recovering from multiple strokes. Carolyn's health challenges reshaped not only her life, but her art. During her stroke recovery, she taught herself to play bass, reinventing her role in the band and reclaiming her place on stage with a renewed sense of purpose. In this conversation, we explore what it means to pursue a demanding creative career while managing chronic illness, how music can become part of healing, and what resilience really looks like when the unexpected changes everything.   In This Episode, We Discuss: Carolyn's early diagnosis with Type I diabetes and how it shaped her life before fame Surviving multiple strokes and the recovery process  Learning to play bass as part of rehabilitation and healing Returning to the stage after major health trauma Balancing touring, recording, and performance with ongoing health needs Making career accommodations without giving up on dreams How lived experience influences Nu-Blu's music  Navigating marriage, creativity, and entrepreneurship through serious illness The power of community, music, and perseverance Advice for anyone worried a diagnosis will limit their future    Resources:  Carolyn's Band Nu-Blu BlueGrass Ridge Syndicated TV Show hosted by Carolyn and Daniel Routh  FDA Drug Safety Communication: Updated information about the risk of blood clots in women taking birth control pills containing drospirenone (including Yasmin and Yaz)   Connect With Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Today's episode is about clinical genetic services. In the first segment, Khalida talks to authors Courtney and Jade about retention of patient-facing genetic counselors and how generational age and work environment influence retention. For the second segment, Khalida chats with Dr. Ba-Jaj about telegenetics in India, reviewing data from 3 years and almost 1000 cases!     Segment 1: Factors influencing retention of patient-facing genetic counselors: Role of generational age and work environment Courtney Schroeder, MS, LCGC is an oncology genetic counselor at Indiana University Health. She received her BS in Psychology and Biology from the University of Dayton and her MS in Genetic Counseling from the University of North Carolina Greensboro. Courtney primarily works with the Precision Genomics team at IU Health. She also manages the Hereditary Renal and Prostate Cancer Clinic, which she established through a grant-funded project.   Jade McIntyre, MS, LCGC is a 2025 graduate of Indiana University Genetic Counseling Program. She is currently working as a genetic counselor in the Medical and Molecular Genetics Department at Indiana University Health. Jade is grateful for the opportunity to share the findings from her graduate student research that was published in July 2025.   In this segment we discuss: - This episode explores factors influencing retention of patient-facing genetic counselors. - The study highlights flexibility, autonomy, and experience as key drivers of retention. - Results show higher retention among older, more experienced counselors. - The discussion emphasizes employer strategies to improve workforce retention.   Segment 2: Telegenetics in India: A 3-year review of 938 appointments and patient–clinician perspectives   Dr Shruti Bajaj completed her MBBS and MD Pediatrics from Seth Gordhandas Sunderdas Medical College and King Edward Memorial Hospital, Mumbai. She subsequently pursued a Fellowship in Clinical Genetics, accredited by Maharashtra University of Health Sciences, from Seth Gordhandas Sunderdas Medical College and King Edward Memorial Hospital, Mumbai. Thereafter, Dr. Shruti Bajaj amassed vast clinical experience as an Assistant Professor in the busy Department of Pediatrics and Clinical Genetics at Seth Gordhandas Sunderdas Medical College and King Edward Memorial Hospital, Mumbai, for five years (2013- 2017). She has to her credit a short observership and training in Clinical & Laboratory Genetics from Kasturba Medical College, Manipal. She has additionally been trained through multiple short modules in different subspecialities of Clinical Genetics from prestigious centres across the country and the world. Some of these include the 'Cancer genetic counseling' course from Tata Memorial Hospital, Mumbai and the challenging 'Skeletal dysplasia' course from Lausanne, Switzerland. Dr Shruti Bajaj is the Founder and Director of The Purple Gene Clinic, which she established in 2017. The Purple Gene Clinic provides cares to patients across the country, and is one of the busiest and most trustworthy Genetic Clinics in India. Despite a demanding and busy practice, Dr Shruti Bajaj obtained the prestigious International Masters Degree in Neurometabolism and Cell Biology, from SJD Barcelona's Children Hospital, University of Barcelona, in 2024. During this course, Dr. Bajaj was awarded the prestigious International Travel Scholarship for both 2023 and 2024, after her submitted clinical cases were selected as the best amongst all applications, highlighting her exceptional clinical acumen and dedication. As a testimony to her passion for academics, Dr Bajaj has numerous national and international publications, as well as chapters in leading textbooks, to her credit. Dr Bajaj's innate compassion and passion for social services led her to establish a support group for individuals with Down syndrome, called PEHEL, in Mumbai in 2018. She also runs a charitable OPD at The Purple Gene Clinic, called Shantidevi Gupta Charitable OPD, in the loving memory of her late grandmother. Social media handles: Linkedin profile name: Dr Shruti Bajaj (Agarwal)  In this segment we discuss: - How tele-genetics improves access to genetic care across India. - When pure vs hybrid telemedicine works best for diagnosis. - Patient cost and time savings alongside clinician-reported challenges. - Scalable lessons for implementing tele-genetics in resource-limited settings.   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this deeply moving episode we explore the reality of chronic pain, the kind that reshapes identity, erodes independence, and too often leaves patients feeling invisible within the healthcare system. Joining us is Meredith Mangold, an inflammatory bowel disease and chronic pain patient advocate whose medical journey began in college and evolved into years of relentless, life-altering pain. Meredith lives with ulcerative colitis, chronic abdominal and pelvic pain, and a constellation of overlapping medical conditions that left her bedbound for years and searching desperately for answers. As a college student, Meredith landed in the ICU with toxic megacolon, a rare and life-threatening complication of inflammatory bowel disease. What followed were multiple major surgeries, escalating pain, and an exhausting cycle of treatments, including opioids, ketamine, spinal cord stimulation, and repeated detox attempts, none of which provided lasting relief. At her lowest point, Meredith's pain hovered at an 8 out of 10 daily, her world narrowed to her bed and doctors' appointments, and hope felt out of reach. In this conversation, Meredith courageously shares what it's like to live with unrelenting pain, the emotional toll of medical trauma, and the devastating impact chronic illness can have on mental health, identity, and self-worth. She also opens up about medical dismissal, the difficulty of managing multiple diagnoses, and the isolation that so many chronic pain patients quietly endure. After years of setbacks, Meredith found a turning point through a personalized, multidisciplinary approach to pain management, one that treated her as a whole person, not just a diagnosis. While her pain hasn't disappeared, it has become more manageable, allowing her to reclaim pieces of her life she once believed were gone forever. Today, Meredith is the founder of Empower Health Strategies, where she uses her lived experience to help healthcare organizations and digital health companies build more patient-centered solutions. Her story is a powerful reminder that progress doesn't always mean being pain-free, sometimes it means being heard, believed, and given the chance to rebuild. In this episode, we discuss: What toxic megacolon is and why it's so dangerous The physical and emotional realities of being bedbound with chronic pain Medical gaslighting, misdiagnosis, and navigating overlapping conditions The toll of long-term opioid use and repeated detox attempts How unmanaged pain contributes to depression, anxiety, and medical PTSD What changed when Meredith finally found a care team with “more ideas” How lived experience can become a powerful form of advocacy A message of hope for anyone who feels they've reached the end of the road This episode is for anyone living with chronic pain, loving someone who is, or working in healthcare and seeking to better understand the human cost of untreated and misunderstood pain. Meredith, thank you for your honesty, vulnerability, and advocacy. Your story gives voice to so many who are still struggling, and reminds us all that healing can take many forms. During the episode we mentioned Hopkins Medicine's spotlight on Meredith and a previous episode of It Happened To Me, #40 Overcoming Crohn's Through Pilates with Ryan Hodgkinson. Connect With Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.  “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer. See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Happy New Year listeners! We hope you enjoyed the holidays and are off to a wonderful start of 2026!    The last episode we released featured our Executive Producer Kira Dineen putting on her genetic counseling hat to explore how genetic counselors can help those in the rare disease community. With how much you all enjoyed that “blast from the past” episode, we thought we would bring you one more before our new episodes of 2026 kick off.  So we are continuing on the topic of rare diseases genetics, and revisiting our episode with Amy Patterson, who is a genetic counselor as well. In this conversation she shares with Cathy and Beth about genetic screening and testing available for rare diseases including her speciality of skeletal dysplasia.   Genetic Counselor Amy Patterson shares about genetic screening and testing available for rare disease including her speciality of skeletal dysplasias.    Amy Patterson (she/her) is a licensed pediatric and adult genetic counselor in the Johns Hopkins Department of Genetic Medicine. She primarily works with patients in the Greenberg Center for Skeletal Dysplasias as well as the General Genetics clinic. Especially in the skeletal dysplasia space, Amy works to promote a holistic patient experience, including psychosocial counseling, connection with patient advocacy groups, informed consent, genetic testing and interpretation of results, coordination of care, and discussion of research options. Amy was a LEND Fellow and graduated from the Boston University Genetic Counseling program in 2021. She has focused much of her research and clinical work on the intersection of rare conditions, disability, and patient advocacy.   Amy initially started advocating in the rare disease space due to her best friend's sibling's rare genetic disorder, Congenital Hyperinsulinism. We actually interview their mother on Episode 37 of It Happened To Me. As a high schooler, Amy started educating their peers and community about rare disease on Rare Disease Day every year. After moving to Boston, she started volunteering at a Community Engagement Liaison for the Rare Action Network (RAN), the advocacy branch of NORD, then became the RAN Massachusetts State Ambassador. Through this work, she started putting on Rare Disease Day events at Boston Children's Hospital, and now at Johns Hopkins Hospital as a genetic counselor. Rare Disease Day allows all rare disease stakeholders to come together to share their experiences and continue to learn. Amy is passionate about this global effort to raise awareness and advocate for improved quality of life, diagnosis, and access to care for Rare patients and families.   Want to listen to our other episodes with genetic counselors?    In Episode 4, our Executive Producer, Kira Dineen, who is also a genetic counselor, shares how genetic counselors can help people navigate having a rare disease.    In Episode 7, Genetic Counselor Karen Grinzaid explains prenatal and cancer genetic testing. Kira also joins as a guest host since this is her area of expertise.    Want to speak to a genetic counselor? Find one in your area via FindAGeneticCounselor.org.     Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

Today we are featuring two articles that relate to moving genetics into mainstream healthcare. In our first segment, we discuss polygenic risk scores and the transition from research to clinical use. Our second segment focuses on hypermobility Ehlers Danlos Syndrome and the triaging of clinical referrals.    Segment 1: Readiness and leadership for the implementation of polygenic risk scores: Genetic healthcare providers' perspectives in the hereditary cancer context   Dr Rebecca Purvis is a post-doctoral researcher, genetic counsellor, and university lecturer and coordinator at The Peter MacCallum Cancer Centre and The University of Melbourne, Melbourne, Australia. Dr Purvis focuses on health services delivery, using implementation science to design and evaluate interventions in clinical genomics, risk assessment, and cancer prevention.   In this segment we discuss: - Why leadership and organizational readiness are critical to successful clinical implementation of polygenic risk scores (PRS). - How genetic counselors' communication skills position them as key leaders as PRS moves from research into practice. - Readiness factors healthcare systems should assess, including culture, resources, and implementation infrastructure. - Equity, standardization, and implementation science as essential tools for responsible and sustainable PRS adoption. Segment 2: A qualitative investigation of Ehlers-Danlos syndrome genetics triage   Kaycee Carbone is  a genetic counselor at Boston Children's Hospital in the Division of Genetics and Genomics as well as the Vascular Anomalies Center. Her clinical interests include connective tissue disorders, overgrowth conditions, and somatic and germline vascular anomaly conditions. She completed my M.S. in Genetic Counseling at the MGH Institute of Health Professions in 2023. The work she discusses here, "A qualitative investigation of Ehlers-Danlos syndrome genetics triage," was completed as part of a requirement for this graduate program.    In this segment we discuss: - Why genetics clinics vary widely in how they triage referrals for hypermobile Ehlers-Danlos syndrome (hEDS). - How rising awareness of hEDS has increased referral volume without clear guidelines for diagnosis and care. - The ethical and emotional challenges genetic counselors face when declining hEDS referrals. - The need for national guidelines and clearer care pathways to improve access and coordination for EDS patients. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

Happy holidays listeners! With the year coming to an end, Cathy Gildenhorn, Beth Glassman, and our Executive Producer Kira Dineen have been reflecting back on a full three years of “It Happened To Me”. We've produced nearly 75 episodes and learned so much along the way. A good chunk of them have been exploring rare diseases and hearing people's journeys from early symptoms, to diagnosis, to treatment, and beyond. With this in mind, we want to revisit an episode that takes a more macro view on rare diseases.  If you're a long time listener of the show, you may know Kira Dineen is not only produces the show, but is also a practicing genetic counselor, so we thought it would be interesting to bring her in front of the mic in this episode to talk about how genetic counselors can help those in the rare disease community.    Genetic Counselor, and our podcast co-producer, Kira Dineen shares her insight on when to pursue genetic counseling and how genetic counselors can help people in the rare disease community. Co-producer Kira Dineen, MS, LCGC, CG(ASCP)CM has over a decade of podcast experience fueled by a passion for science communication. She has hosted and produced 7 podcasts. Her multi-award winning podcast, "DNA Today", is in the top 1% of podcasts globally. She was accepted into The Podcast Academy and has served as a Blue Ribbon Panelist for The Ambies. Kira received her Diagnostic Genetic Bachelor's of Science degree at the University of Connecticut and is a certified Cytogenetic Technologist. She received her Master's of Science in Human Genetics at Sarah Lawrence College in New York and is a licensed certified genetic counselor currently practicing in Connecticut.  On This Episode We Answer: When should a person or couple consider genetic counseling? Is a referral required to see a genetic counselor? Does insurance cover genetic counseling for this? Is genetic testing done before the visit?  How many visits are we talking about? Do you ever suggest adoption as an option? When? How do you help people with genetic conditions? Why get tested at all? What have you learned from interviews with patients and rare disease advocates? Do you recommend joining rare disease advocacy groups? Why study rare diseases? What is CRISPR? How could this help treat…or even cure…genetic conditions?  You produce a rare disease podcast that focuses on nano rare diseases. What's a nano-rare disease? Stay tuned for the next new episode of It Happened To Me! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.  It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today's Kira Dineen is our marketing lead and co-producer. Ashlyn Enokian is our graphic designer.  See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this uplifting episode, hosts Beth Glassman and Cathy Gildenhorn sit down with Leanna Scaglione, a powerhouse rare disease advocate and marathon runner living with NF2-Related Schwannomatosis (NF2-SWN), formerly known as neurofibromatosis type 2. Diagnosed at just 16 years old, Leanna's life changed dramatically when tumors were discovered in her nervous system, a hallmark of NF2-SWN. Many would have slowed down. Instead, Leanna sped up. Today, she has: Completed multiple marathons, including Berlin and New York City Participated in clinical trials Become an advocate and 2025 Ambassador for the Children's Tumor Foundation Set her sights on becoming the first person with NF2 to complete all 7 Abbott World Marathon Majors Her message is powerful: a diagnosis doesn't define the finish line. In This Episode, We Discuss: What NF2-SWN is and how it impacts the nervous system The emotional toll of receiving a life-altering diagnosis as a teenager Losing a dream — and finding a new one Running marathons through surgeries, treatments, and uncertainty How advocacy and visibility can change the rare disease landscape Building a life rooted in resilience, purpose, and possibility About Our Guest: Leanna Scaglione is 34 years old living with NF2-Related Schwannomatosis (NF2-SWN). Ever since being diagnosed at 16 years old, she has refused to live defined by her diagnosis. From relearning to walk, participating in immunotherapy drug trials, and going through numerous surgeries she has defied the odds against her. Most recently she has undergone surgery to remove her right acoustic neuroma. She continues to live her best life as an endurance runner, sharing her story and experiences living with NF2 in hopes to spread awareness, motivate her community and rally for a cure. Resources:  Children's Tumor Foundation NF2 Accelerator: A Strategic Portfolio Approach to End NF2 Articles Explaining NF2 MedlinePlus GeneReviews National Organization for Rare Disorders (NORD) Research from China that Leanna reference for a gene therapy for NF2 Yuan R, Wang B, Wang Y, Liu P. Gene Therapy for Neurofibromatosis Type 2-Related Schwannomatosis: Recent Progress, Challenges, and Future Directions. Oncol Ther. 2024 Jun;12(2):257-276. doi: 10.1007/s40487-024-00279-2. Epub 2024 May 17. PMID: 38760612; PMCID: PMC11187037. Additional Research Articles Alexandra K. O'Donohue, Samantha L. Ginn, Gaetan Burgio, Yemima Berman, Gabriel Dabscheck, Aaron Schindeler, The evolving landscape of NF gene therapy: Hurdles and opportunities, Molecular Therapy Nucleic Acids, Volume 36, Issue 1, 2025, 102475 ,ISSN 2162-2531, https://doi.org/10.1016/j.omtn.2025.102475. Connect With Us:   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.  “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer. See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Earlier this month, we celebrated Genetic Counselor Appreciation Day on November 13! In recognition of this, we are featuring 2 articles that explore professional issues in the field of genetic counseling. In our first segment, we talk to Dr. Rachel Mills about the professional identity of early-career genetic counselors and in the second segment, we speak to Dr. Laura Yeates about self care strategies in cardiovascular genetic counselors. Segment 1: Early-career genetic counselors' professional identity formation through experiences with continuing education at a professional conference Dr. Rachel Mills is an Associate Professor and the Director of Research for the University of North Carolina Greensboro Genetic Counseling Program. She is a career-long research genetic counselor who is passionate about mentoring student researchers. Rachel's recent research has focused on professional issues in genetic counseling. In this segment we discuss: How early-career genetic counselors form and affirm their professional identity. Generational differences in values and post-COVID conference experiences. The role of mentorship and community in fostering belonging. Implications for training programs and future identity research.   Segment 2: Well-being and self-care strategies for cardiovascular genetic counselors: A qualitative study Dr Laura Yeates is a certified cardiac genetic counsellor with more than 18 years' experience, working in both research and clinical roles. She recently completed her PhD in genetic counselling under the supervision of A/Prof Jodie Ingles at the Garvan Institute in Sydney, Australia. Her PhD focused on developing a support intervention for families affected by sudden cardiac death as well as well-being in cardiovascular genetic counsellors. Laura is a past Chair (president) of the Australasian Society of Genetic Counselors (ASGC) and continues to volunteer on various ASGC committees.  In this segment we discuss: How cardiac genetic counselors experience and manage the emotional impact of sudden cardiac death cases. The role of countertransference, supervision, and team support in sustaining well-being. How administrative burden contributes to stress and reduces time for meaningful clinical work. Practical and organizational strategies that help counselors build sustainable self-care routines. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.  DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Sydney Arlen.

We're re-releasing one of our most popular episodes, an important conversation with Wolfram syndrome expert Dr. Fumi Urano.   We're bringing this episode back in honor of Diabetic Eye Disease Month, and because it's the perfect follow-up to our last episode featuring Dr. Rachel Hyman and our very own co-host Cathy Gildenhorn as guests. Their experiences with the milder, adult-onset variant of Wolfram syndrome sparked so much interest, we knew this episode needed another moment in the spotlight. You'll hear Cathy interview Dr. Urano, her lead physician, about symptoms, diagnosis, and promising research underway to help people with rare neurodegenerative disorders like Wolfram syndrome.   We are thrilled to have Dr. Fumihiko Urano on “It Happened To Me” as he is our co-host Cathy's lead doctor, for her variant of the rare disease, Wolfram Syndrome.    Fumihiko “Fumi” Urano, MD, Ph.D., is a Physician and Medical Researcher specializing in Wolfram syndrome, characterized by juvenile-onset diabetes, vision loss, and neurodegeneration. Dr. Urano is a Professor of Medicine and Pathology & Immunology, an attending physician at Endocrinology Genetics Clinic, and currently holds Samuel E. Schechter Endowed Professorship in Medicine at Washington University Medical Center, St. Louis, USA. Dr. Urano is a driving force in the study of Wolfram syndrome and Related Disorders, including WFS1-related disorders/Wolfram-like disorders. As the Director of the Wolfram Syndrome and Related Disorders Clinic and Study at Washington University Medical Center, Dr. Urano has been leading the clinical, translational, and interventional studies of Wolfram syndrome and Related disorders. Dr. Urano's collaboration with colleagues at the medical center and around the world has allowed him to develop cutting-edge treatments for this disease, including gene therapy and regenerative therapy.    Learn more on their Wolfram syndrome website, wolframsyndrome.wustl.edu. If you want to reach out directly you can contact the Research Nurse Coordinator Stacy Hurst, RN, CDE by calling 314-747-3294 or emailing shurst@wustl.edu.    During the episode Dr. Urano mentioned two episodes of “It Happened To Me”: during this episode. The first was our interview with Dr. Gladstone in Episode 5. He also gave a shoutout to our conversation with Stephanie Snow Gebel (Snow Foundation) in Episode 9.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

In this insightful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn (in a rare guest role!) sit down with Dr. Rachel Hyman, a clinical psychologist from Seattle whose experience with Wolfram syndrome was recently featured in The Washington Post here. Wolfram syndrome is a rare genetic disorder that affects vision, blood sugar regulation, and neurological function. Often diagnosed in childhood, it can present very differently from one person to another, and in this episode, we hear from two women living with a milder, adult-onset form of the condition, most common among those of Ashkenazi Jewish descent. Rachel and Cathy open up about the long diagnostic odyssey, early symptoms that were misunderstood, and how it feels to finally have a genetic explanation after years of uncertainty. They share how they've each learned to adapt, from managing diabetes and vision loss to embracing new technologies that restore independence. Their stories highlight the power of self-advocacy, medical persistence, and community, reminding listeners that awareness is often the first step toward better care and future research. In This Episode, You'll Learn: What Wolfram syndrome is and how symptoms are on a spectrum  Rachel's diagnostic journey from gestational diabetes to genetic confirmation Cathy's daily strategies for living with vision loss, pre-diabetes, and sensory changes The role of technology and accessibility tools in maintaining independence How emotional resilience and community support help patients face uncertain prognoses The critical importance of genetic testing and awareness for rare neurodegenerative diseases Hope for the future of Wolfram research and patient advocacy About the Guests Dr. Rachel Hyman Rachel Hyman is a clinical psychologist based in the Seattle area. She specializes in working with older teens and young adults navigating anxiety and depression and serves as adjunct faculty at Antioch University, where she supervises doctoral students in psychology. Rachel's personal journey with Wolfram syndrome was featured in The Washington Post, shedding light on this underrecognized condition and the importance of accurate genetic diagnosis. Cathy Gildenhorn Usually behind the mic as co-host of It Happened To Me, Cathy joins this episode as a guest to share her own journey with Wolfram syndrome. She has devoted much of her life to improving the lives of others and connecting women to Jewish life and each other. She has served on several local, national and international boards and currently serves on the board of the Florence Melton School of Adult Jewish Learning. Cathy also served as presidential appointee to the United States Holocaust Memorial Council. While a council member, she worked on the opening of the museum.  Recommended Resources  Jewish Wolfram Network Johns Hopkins' The Wilmer Eye Institute Wolfram Syndrome and Related Disorders Clinic and Study at Washington University Medical Center The Snow Foundation   Relevant Episodes  #3 Wolfram Syndrome with Cathy Gildenhorn #9 Wolfram Syndrome with Stephanie Gebel Snow #18 Hattersley-Urano Wolfram Syndrome with Parent Tamara Blum #21 Wolfram Syndrome with Parent Pat Gibilisco #26 Wolfram Syndrome Expertise from Dr. Fumihiko Urano   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

The case for integrating genetic counselors into primary care:A paradigm shift for our profession   Natasha Berman (she/her) MA, MS, MPH, CGC is a clinical genetic counselor at the UPMC Department of Family Medicine who works within the primary care precision medicine clinic. She provides direct patient care to patients for a variety of indications. She has coauthored multiple textbook chapters covering family medicine genetic topics. Her primary areas of research include improving equitable genetics care.   Vivian Pan, MS, CGC is a Senior Genetic Counselor at the University of Illinois Cancer Center and Mile Square Health Center, where she provides genetic counseling services and conducts research on integrating genetics into primary care settings. She has extensive experience developing telehealth and precision medicine programs across diverse healthcare settings, with a focus on increasing equitable access to genomic medicine for underserved populations.   In this episode we discuss: Integrating genetic counseling into primary care to improve access and equity Educating and collaborating with primary care providers to enhance and expand  genomic care Expanding counselor roles for multifactorial conditions and preventive care Sustaining the model through advocacy, partnerships, and reimbursement reform   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.  

In this heartfelt episode of It Happened To Me, hosts Cathy Gildenhorn and Beth Glassman sit down with Nikki McIntosh, a rare disease advocate, writer, and mother whose life changed when her son Miles was diagnosed with Spinal Muscular Atrophy (SMA). Nikki McIntosh is the founder of Rare Mamas®, a resource, and community dedicated to supporting and empowering mothers of children with rare diseases. She is the author of Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease and host of the Rare Mamas Rising podcast. Her mission stems from the profound need she felt after her son was diagnosed with a rare disease, fueling her with a passion and purpose to offer a lifeline of hope and connection to other rare moms. Nikki is a sought-after speaker and a trusted voice in the rare disease space. From national conferences and patient advocacy group gatherings to biotech industry meetings and media interviews, Nikki passionately advocates for the rare disease community. She lives in Southern California with her husband, Tony, and their sons, Mason and Miles. In 2013, at just eighteen months old, Nikki's youngest son, Miles, was diagnosed with spinal muscular atrophy (SMA)—a rare, degenerative neuromuscular disease. Told there was no treatment, no cure, and that regression was inevitable, Nikki refused to accept a future that offered only decline. She walked away from her career and poured herself into caregiving, advocacy, and an unrelenting search for answers. That search led her and her husband to a clinical trial for a drug that showed promise. Miles was enrolled. The treatment was effective. That drug—now known as Spinraza—went on to become the first-ever FDA-approved treatment for SMA. From that breakthrough moment, Nikki immersed herself in the world of rare disease advocacy. She began writing down everything she wished she had known at the beginning of their journey. With a deep desire to empower other rare moms, she wrote the book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease. Nikki continues to walk this road alongside her son, and alongside the millions of mothers who are parenting children with rare diseases. She has a deep passion for providing strategies, strength, support, and sisterhood to her fellow rare moms. In This Episode, You'll Learn: What Spinal Muscular Atrophy (SMA) is and how it affects children and families Nikki's emotional journey from diagnosis to advocacy How her son's participation in a clinical trial offered hope and insight The inspiration behind Rare Mamas and its empowering message Strategies for parents navigating rare disease diagnoses and complex healthcare systems The importance of building community and finding your voice as a caregiver How to balance hope for new treatments with the daily realities of care Resources:  Nikki's website that houses all her projects, RareMamas.com  Buy Nikki's book: Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Listen to Nikki's podcast: Rare Mamas Rising Learn more about SMA via MedlinePlus Patient Empowerment Program, another podcast in our science podcast network Gene Pool Media, is hosted by one of the pharmacists that helped develop Spinraza, the first FDA approved treatment for SMA. Miles was part of the clinical trial.  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

Kenny Kasnett, a seasoned executive and entrepreneur whose life took an unexpected turn with a diagnosis of interstitial lung disease (ILD) joins the podcast for a powerful episode. What began as a persistent cough during a round of golf soon unraveled into a life-threatening condition that would ultimately require a lung transplant. Kenny opens up about the diagnostic journey, the emotional toll of living with ILD, and the difficult road leading up to transplant surgery. He shares a behind-the-scenes look at the complexities of preparing for and receiving a lung transplant, from waiting on the national registry to the moment he received the life-changing call. But Kenny's story is more than medical, it's about resilience, gratitude, and the extraordinary gift of a second chance at life. He speaks candidly about the pain, fear, and vulnerability he faced along the way, and how he leaned on the unwavering support of family, friends, and a stellar medical team. We also explore the long-term realities of transplant recovery, from managing medications and monitoring for rejection to navigating new physical limitations with hope and strength. Kenny's insights offer a beacon of light for others navigating lung disease and chronic illness. Topics Covered: Early signs and diagnosis of interstitial lung disease (ILD) Understanding ILD and idiopathic pulmonary fibrosis (IPF) Emotional and physical impact of progressive lung failure Choosing a lung transplant center and navigating evaluations The day of the transplant: fears, preparations, and gratitude Recovery and rehab: from ICU to walking again Long-term care, medications, and monitoring for rejection How this journey reshaped Kenny's perspective on life Advice for newly diagnosed patients and caregivers The importance of organ donation and honoring the donor Guest Bio: Kenny Kasnett is an accomplished business leader with decades of experience in finance, homebuilding, and real estate. Beyond his professional roles, Kenny is a lung transplant recipient and fierce advocate for those living with interstitial lung disease. Through his story, Kenny offers hope, encouragement, and critical insights into navigating serious illness with courage and grace. Resources & Links: Learn more about Interstitial Lung Disease (American Lung Association) National Jewish Health - Interstitial Lung Disease (ILD) Program Organ Donor Registration – Donate Life During the interview, Beth referenced a previous episode of It Happened To Me where the inspiring Zach Ship shared about his experience of getting a kidney transplant, this was Episode #44. The following episode (#45) Zach joined us again to talk about his other medical challenge, experiencing blindness before the age of 30.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this episode, we talk with two authors who have papers featured in the special issue of the Journal of Genetic Counseling on Research Methods in Genetic Counseling. In the first segment we explore implementation science and its utilization in bridging the gap between research and clinical practice. In our second segment, we talk to an author about retrospective chart reviews and the benefits and drawbacks of this methodology.   Segment 1: A guide to utilizing implementation science for genetic counseling   Alanna Kulchak Rahm is a certified genetic counselor and implementation scientist with a PhD in Health and Behavioral Science. She has spent her career specializing in the implementation of genomics and precision health in healthcare systems. For over 25 years, she has conducted research on the utilization of genetic information by individuals and healthcare systems, new paradigms for identifying individuals with genomic risk, and new service delivery models for genomic testing. She has been a driver for the integration of implementation science and patient engagement to understand and study the integration of genomics into the learning health system, and is a tireless advocate of implementation science in genetic counseling. She has participated in and led many workshops and trainings on implementation science in genetics, serving as a faculty mentor for the NIH Training in Dissemination and Implementation Research in Cancer (TIDIRC) and recently as a co-lead of the Training in Dissemination and Implementation Research in Genomics and Precision Public Health (TIDIR-GPPH). She is currently a Program Director in the Division of Genomic Medicine at the National Human Genome Institute (NHGRI) where she directs the Network of Genomics-Enabled Learning Health Systems and other programs and continues to advance the integration of implementation science and genomics.   In this segment we discuss: Implementation science (IS) as a bridge between research and clinical practice in genetic counseling Misconceptions about IS, key frameworks like RE-AIM, and practical applications in daily work Using IS to identify and reduce inequities in genomic medicine Future integration of IS into training, research, and professional practice Link to the 2025 annual conference on dissemination and implementation    Segment 2: Leveraging hindsight: A retrospective chart review how-to for genetic counselors   Dr. Ramsey is the Section Chief of Individualized Therapeutics in the Division of Clinical Pharmacology, Toxicology and Therapeutic Innovation at Children's Mercy. She is leading the implementation of a pharmacogenomics program that is fully integrated with the electronic health record, developing model-informed decision support for several medications, and Co-director of their Pediatric Clinical Pharmacology Fellowship Program. Before joining Children's Mercy, Dr. Ramsey was an Associate Professor and co-director of the Genetic Pharmacology Service at Cincinnati Children's Hospital. She completed her postdoctoral fellowship in Pharmacogenetics at St. Jude Children's Research Hospital and received her PhD in Molecular, Cellular, Developmental Biology and Genetics from the University of Minnesota – Twin Cities. Dr. Ramsey is interested in all aspects of pharmacogenetics, from basic research to implementation in patient care.   In this segment we discuss: The role of retrospective chart reviews in genetic counseling research Common pitfalls such as unclear aims, time demands, and data extraction challenges Strategies for success, including SOPs, REDCap, and multidisciplinary collaboration Lessons learned on refining criteria, ensuring data quality, and team engagement   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield. 

In this episode of It Happened To Me, we share a story of love, loss, and advocacy in the rare disease community. We are joined by Jordan Kruse, whose son, Pruitt, was born with ornithine transcarbamylase (OTC) deficiency, and Dr. Susan Berry, a geneticist at M Health Fairview and professor at the University of Minnesota Medical School, who specializes in rare metabolic disorders like OTC deficiency and helped Pruitt.  OTC deficiency is a rare urea cycle disorder (UCD) that prevents the body from properly removing ammonia from the blood. This dangerous buildup can cause severe complications, and in Pruitt's case, tragically ended his life at only six months old.  Through her grief, Jordan founded The Brave Little One Foundation, honoring Pruitt's legacy by supporting families facing medical hardship and raising awareness about rare genetic conditions. Together, she and Dr. Berry shed light on: What OTC deficiency is and how it affects the body Why newborn screening doesn't always catch the condition The role of geneticists and medications in diagnosing and managing OTC deficiency Jordan's experience advocating for Pruitt's care in a complex medical system The importance of foundations and rare disease organizations in offering resources and hope What families and healthcare providers need to know about navigating rare disease diagnoses Resources: The Brave Little One Foundation National Urea Cycle Disorders Foundation (NUCDF)  The Rare Diseases Clinical Research Network (RDCRN Consortia) The Future of Personalized Medicine is Here: Baby KJ received a first-of-its-kind personalized gene editing therapy at CHOP to treat his urea cycle disorder Ornithine transcarbamylase deficiency explained by MedlinePlus    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Join us as we delve into the evolving landscape of clinical trials in Latin America with Julio G. Martinez-Clark, CEO of BioAccess. Discover how his company is pioneering pathways for medtech innovators and shaping the future of medical device innovation in emerging markets.   Bioaccess® is a trailblazing company that's helped over 100 Medtech innovators navigate global clinical trials, and he currently serves as Ambassador of International Accrediting Organization for Clinical Research in the Americas. With a career that spans healthcare infrastructure, telecommunications, and regulatory strategy, Julio is a leading voice in the field of medical device innovation in emerging markets.   From his early days at Johns Hopkins Hospital to his current role in shaping ethical and efficient trial systems across Latin America, Julio's mission is clear: to expand access to high-quality research for patients and sponsors alike. He's also the host of the Global Trial Accelerators™ podcast, where he dives into trends in Medtech, Biopharma, Radiopharma and clinical trial innovation.   We unpack what makes Latin America a strategic region for clinical trials, especially for rare diseases, and explore how improving trial access can speed innovation, and change lives.   Episode Discussion Topics:    Introduction to Julio G. Martinez-Clark and his role at BioAccess. The clinical trial landscape in Latin America and its strategic importance. Julio's career journey from Johns Hopkins Hospital to BioAccess. The impact of cultural competence and community engagement on clinical trials. Challenges and solutions for conducting clinical trials during the pandemic. The role of artificial intelligence and digital tools in clinical trials. The future of clinical research in Latin America, including radiopharmaceuticals and theranostics. The importance of international standards and certifications for clinical research sites. Success stories and innovative approaches in clinical trials. Julio's podcast, Global Trial Innovators, and its focus on industry education. During the episode a blog post on bioaccess' website was referenced that highlights academic papers that talk about the higher recruitment and retention rates in Latin America, here it is: https://www.bioaccessla.com/blog/the-latin-american-advantage-why-clinical-trial-recruitment-and-retention-outpace-the-us-and-europe   Connect With Us:   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

We are discussing perspective changes in neurology genetics with the crossover of the APOE gene in neuro and cardio as well as telehealth for neurology predictive testing. Segment 1: Is it time for a paradigm shift? Inclusion of APOE  on genetic dyslipidemia panels.   Emily Brown is a certified genetic counselor at the Center for Inherited Heart Disease at Johns Hopkins Hospital. She graduated from the University of Maryland Genetic Counseling Program in 2014 and has practiced in cardiology for the past 10 years. Her main areas of interest include dyslipidemias, and she is a member of the National Lipid Association.   Hannah Ison is a cardiovascular genetic counselor at the Stanford Center for Inherited Cardiovascular Disease. She received her Master's in Medical and Molecular Genetics from Indiana University in 2018, and returned home to California to begin her career. Her primary clinical interest includes working with patients who have inherited lipid conditions in both the adult and pediatric setting. A large part of her role has been focused on developing a Pediatric Lipid Clinic at the Stanford Children's Hospital, allowing her to care for patients across the generations. Hannah was the co-chair of the Dyslipidemia Working Group through the cardiovascular SIG from 2020-2024 where she worked with members to develop dyslipidemia resources. In addition to her work in the lipid space, she also provides inpatient and outpatient genetic counseling to patients with isolated congenital heart disease, and enjoys participating in various research opportunities.    In this segment we discuss: - APOE's relevance in both Alzheimer's and cardiovascular disease - Counseling strategies for APOE alleles (ε2, ε3, and ε4), including penetrance, lifestyle modification, and exploration of risk for conditions and symptoms external to Alzheimer's - Case studies highlighting APOE's diagnostic, variant, and treatment insights - The need for standardization, education, and reframing of APOE testing in practice Segment 2: Patient-reported outcomes for remote and in-person visits for genetic counseling in adult neurology.   Rachel A. Paul, MS, CGC and Laynie Dratch, ScM, CGC are board-certified genetic counselors who specialize in adult neurogenetics and work with the Penn Neurogenetics Therapy Center team in Philadelphia, PA (https://www.linkedin.com/company/penn-neurogenetics-therapy-center).   Rachel provides clinical and research genetic counseling services for the Division of Movement Disorders at the University of Pennsylvania. Her research interests include genetic screening for clinical trials access, remote/telemedicine genetic services, and motivations/barriers for genetics utilization. She graduated cum laude from Temple University in Philadelphia, previously worked as a genetic counseling assistant (GCA) for the Penn neurogenetics program, and completed her training with the Arcadia University (now University of Pennsylvania) Genetic Counseling Program.   Laynie's clinical focus includes frontotemporal degeneration (FTD) spectrum disorders, amyotrophic lateral sclerosis (ALS), and other neurodegenerative conditions. Her research interests include the lived experiences of at-risk individuals, predictive genetic testing considerations, and genetic counseling access and service delivery. She graduated summa cum laude from Colgate University with a BA in neuroscience and a minor in psychology, and completed her genetic counseling masters training at the Johns Hopkins University and the National Institutes of Health.   In this segment we discuss: - How COVID-19 pushed neurogenetics counseling from in-person to telehealth. - Why patient satisfaction stayed high across both formats, with video outperforming phone. - What drives visit preferences—travel, tech comfort, privacy, and clinical needs. - Future research to refine protocols, improve access, and explore broader applications.   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this deeply moving episode of It Happened To Me, we sit down with Elizabeth Ansell, founder of #NotJustFatigue, a nonprofit initiative dedicated to raising awareness about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is a condition that is vastly under diagnosed, possibly 90% which would mean it may affect up to 9 million people.    Elizabeth's life changed dramatically as a young adult when she developed ME/CFS—a complex, debilitating condition often triggered by infection. Since 2016, she has been bed-bound, living with severe fatigue, cognitive impairment, and post-exertional malaise. Yet, from her bed, she has become a powerful voice for change.   Through #NotJustFatigue, Elizabeth educates both the public and medical professionals about this misunderstood illness, challenging harmful myths and confronting the stigma that patients face. In this episode, she opens up about her own diagnostic odyssey, the emotional and physical toll of the disease, and the resilience it takes to advocate while living with severe limitations.    What You'll Learn in This Episode:   Elizabeth's journey to an ME/CFS diagnosis and how it changed her life The reality of living bed-bound for nearly a decade Why post-exertional malaise is a hallmark—and often misunderstood—symptom How #NotJustFatigue is changing public perception and medical understanding The connection between ME/CFS and Long COVID Strategies for supporting someone living with ME/CFS The role of storytelling in advocacy and awareness Myths and misconceptions that harm patients The emotional toll of medical gaslighting Hopes for the future of ME/CFS research and treatment More About Our Guest: Elizabeth Ansell, founder of #NotJustFatigue, is an advocate, storyteller, and changemaker for the ME/CFS community. A graduate of the University of Pennsylvania, she has a background in literature and TV production. Bed-bound since 2016, Elizabeth uses her lived experience and creative skills to educate others about ME/CFS, dismantle stigma, and build community for those navigating the same invisible illness.   Here is the visual historical timeline that Elizabeth mentioned during the episode. She also recommends watching #NotJustFatigue's 15 minute short film about the condition.    An update since we recorded with Elizabeth….   In a rare bipartisan move earlier this month (August 2025), the Senate Labor-HHS FY26 Appropriations Report delivered two major wins for the chronic illness community: Formally recognized ME/CFS within the RECOVER Initiative for Long COVID Directed NIH to implement the ME/CFS Research Roadmap within 180 days   This is a long-awaited breakthrough for millions of Americans with ME/CFS, a post-viral disease that has no FDA-approved treatment and receives just $13M in funding annually, despite being more common than Multiple Sclerosis. Advocates are calling this a major step forward in pushing NIH toward accountability and treatments.   Connect With Us:     Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this episode of It Happened To Me, we sit down with the multi-talented Sally Pirie, a comic artist, painter, professor, toymaker, and rare disease advocate, to explore her journey living with Hereditary Angioedema Type III (HAE-3). Sally's path to diagnosis was long, painful, and emotionally fraught, culminating in a deeply moving feature in The New York Times that helped shine a national spotlight on HAE and the broader diagnostic odyssey that so many rare disease patients face.   Sally opens up about the unpredictable flares of HAE, the mental toll of being misunderstood by the medical system, and how she channels her experiences into art, humor, and education.    She is also Professor of Child and Family Studies and Director and Master Artist at the Comics-Based Research Lab at the University of Massachusetts, Amherst. An award-winning newspaper cartoonist and an anthropologist of childhood and infancy, she received her PhD from the University of Colorado, Boulder and is a graduate of Punahou School and Grinnell College. Her areas of expertise include comics-based research methods, ethnographic research and transgender childhoods. She was the 2020 Distinguished Visiting Professor of Liberal Arts at the University of Minnesota, Morris and the 2021 recipient of the Grinnell College Alumni Award in recognition of her lifetime of public service. She once went to New Year's Eve fireworks dressed as a huge blue pufferfish because why not. Life should be suffused with art and joy.    Topics We Cover: What is Hereditary Angioedema Type III, and how is it different from other forms? Sally's early symptoms, misdiagnoses, and emotional health during the diagnostic odyssey Her daughter's experience with HAE while taking gender-affirming estrogen and being the only documented transgender person with the condition  The significance of her New York Times feature  What it feels like to experience an HAE attack and how deadly it can be Navigating academia and advocacy while managing a chronic illness How comics and illustration became a therapeutic and educational tool Invisible illness misconceptions and systemic barriers in rare disease care The importance of laughter, joy, and resilience in the face of adversity Advice for undiagnosed patients and caregivers supporting loved ones with rare conditions You can learn more about Sally on her website. She also highly recommends the Hereditary Angioedema Association for resources. And be sure to read her feature in the New York Times here.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this episode, we talk to two genetic counselors about their recent publications in a special edition of the Journal of Genetic Counseling focused on research methods in genetic counseling. First, Benjamin Helm delves into statistical approaches and discusses how transparency and honesty in research can lead to more meaningful scientific contributions. Then Kennedy Borle explores the challenges and benefits of integrating qualitative and quantitative approaches in genetic counseling research.   Segment 1: “Research methods in genetic counseling: Statistical approaches and resources”   Benjamin M. Helm, PhD, MS, CGC, is an Associate Professor of Clinical Medical & Molecular Genetics at Indiana University with specific interests in cardiovascular genetics, epidemiology, and public health genomics. He works within the Cardiovascular Genetics program at IU School of Medicine/Indiana University Health. His clinical and academic interests include genetic arrhythmias, congenital heart disease, familial hypercholesterolemia and lipoprotein (a), polygenic score methods, and assessment of population screening for genetic cardiovascular disorders. Additional work extends into public health, improving investigation of genetic risk factors for sudden death in infants and children and birth defect surveillance in Indiana.   In this segment we discuss: Importance of systematic bias and robust study design Understanding parametric research: assumptions, sample size, and data behavior Common misconceptions, such as the over-reliance on p-values for legitimacy and the pitfalls of p-hacking Encouragement for genetic counselors to engage with statistical research   Segment 2: “Using mixed methods for genetic counseling research”   Kennedy Borle is a board-certified genetic counsellor and PhD Candidate in Interdisciplinary Studies at the University of British Columbia. Her research is focused on understanding unmet need for clinical genetic services to improve equitable access to care. Kennedy is also passionate about promoting high quality and justice oriented genetic counselling research practices.   In this segment we discuss: The complexities and advantages of using mixed methods in genetic counseling Challenges of integrating qualitative and quantitative data The importance of rigorous planning and study design How collaboration can enhance research outcomes   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.  Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.  DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Stephanie Schofield.

In this second part of our interview with Sartia Edwards, we continue a conversation about her son Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.   Topics Covered: Navigating medical decision-making and advocating for hope Mental health support for caregivers of medically complex children Public policy changes needed in rare disease healthcare The power of patient-centered storytelling through Sarita's Being Rare Podcast Advice and encouragement for families receiving a Trisomy 18 diagnosis   Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita's own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen's on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this powerful episode of It Happened To Me, co-hosts Cathy and Beth sit down with Sarita Edwards, an award-winning advocate, rare disease leader, and mother to Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.   Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.   Topics Covered: What is Trisomy 18 and how it affects the body Elijah's diagnosis and how it shaped Sarita's life and career The challenges of hearing “incompatible with life” as a parent Misconceptions about children living with Trisomy 18 Elijah's involvement in Special Olympics and celebrating milestones The origin and mission of the E.WE Foundation   Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita's own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen's on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

In this episode, we explore the motivations, findings, and clinical implications of a recent study examining patient understanding of the terms “sex” and “gender” in the context of prenatal testing, particularly non-invasive prenatal testing (NIPT).    “Patient understanding of fetal sex versus gender in the context of routine cell-free DNA screening”   Mindy Kolodziejski (she/her) is a Senior Genetic Counselor at University of Kentucky (UK) HealthCare and a graduate of the UTHealth Houston Genetic Counseling Program (UTGCP). She is the first author of "Patient understanding of fetal sex versus gender in the context of routine cell-free DNA screening," published in the Journal of Genetic Counseling, and presented this research at the National Society of Genetic Counselors (NSGC) conference in 2024. As a queer genetic counselor, Mindy is passionate about LGBTQIA+ issues in genetic counseling and strives to improve care, inclusion, and accessibility for transgender and gender-diverse (TGD) individuals. She also provides genetics services in the UK Differences of Sex Development (DSD) clinic. Connect with Mindy on LinkedIn: https://www.linkedin.com/in/mindy-kolodziejski-a07573186/   In this segment we discuss: - Why the terms sex and gender are different, but are often used interchangeably - Factors influencing patient understanding of sex and gender - Ways to help patients understand the information being presented while balancing being accurate and appropriate with the language being used - Specific content and approaches that can be added to prenatal education programs   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.    DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Sydney Arlen.

In this inspiring episode, we're exploring the powerful intersection of music and accessibility with three incredible guests: Dr. Bradley Black, a world-renowned pediatric ophthalmologist and founder of the Vision Through Music program, Makayla, a passionate young musician and student in the program, and Maykaya's mother Joann.  Dr. Bradley Black (he/him) practiced pediatric ophthalmology and strabismus in Baton Rouge, Louisiana. He is past president of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS) and the Louisiana Academy of Eye Physicians and Surgeons (LAEPS). He has served on the boards of directors of AAPOS, the Children's Eye Foundation, the Smith-Kettlewell Eye Research Institute, and LAEPS. He received the Honor Award, Senior Honor Award, and the Lifetime Achievement Award from AAPOS and the Achievement Award, Secretariat Award, and the Outstanding Advocate Award from the American Academy of Ophthalmology. He was elected to the American Ophthalmological Society. In 2024, he received the Parks Silver Medal, the highest honor awarded by AAPOS and CEF-AAPOS. Dr. Black is active in international ophthalmology. He served on the Orbis International Cybersight Medical Advisory Board and has performed and taught pediatric eye surgery in more than thirty countries.  One of his greatest professional achievements to date is founding the Vision Through Music program of the Children's Eye Foundation, which seeks to increase the number of music teachers who work with blind and partially sighted children nationwide. He and his wife, Cindy, have two children and two grandchildren. In his leisure time, you can often find Dr. Black sailing the Gulf of Mexico on his thirty-five-foot sloop.   Makayla Alger (she/her) is a passionate student of the Children's Eye Foundation's Vision Through Music Program (VTM). From an early age, she found joy in singing and playing on her sister's keyboard. She is currently learning violin and will soon begin voice lessons through the VTM program. Makayla lives with a mutation to the TUBB4B gene, which has led to degenerative vision and bilateral sensorineural hearing loss. Over time, she has lost night vision, experienced a decrease in peripheral vision, and developed nystagmus. Her mother, Joann, vividly remembers taking Makayla to a pediatric ophthalmologist, who determined she would need glasses for life. Initially overwhelmed and unsure whether her young daughter would keep them on, Joann recalls when Makayla looked up at her parents and with a soft voice appreciatively said, “thank you.” From that moment, she never took her glasses off. Joann says the family has gotten creative to make things more accessible at home. Beyond her love of music, Makayla is also the author of “The Way I See It”, a story following Elena, a visually and hearing-impaired red fox who navigates Vermont's scenic trails using her heightened senses. Along her journey, Elena meets many woodland creatures and teaches them important lessons about awareness, kindness, and understanding. Makayla and her mom Joann hope to raise awareness about TUBB4B genetic testing, as well as encourage more research into its progression and ultimately a cure. Whether you're a parent, educator, healthcare provider, or music lover, this conversation will show you just how transformative inclusive programming can be. Mentioned in this episode: Vision Through Music program: VisionThroughMusic.org or email contact@visionthroughmusic.org Academy of Music for the Blind: ouramb.org Makayla's book, The Way I See It available here on Amazon. Girl Scouts of America: GirlScouts.org  Summer Camp IN-SIGHT: in-sight.org/camp Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

In this heartfelt episode we welcome guest Carissa Carroll, M.Ed., Founder and Executive Director of Jack's Basket, a nonprofit that has transformed the way families experience a Down syndrome diagnosis. A former educator with degrees from Bethel University and the University of Minnesota, Carissa taught at both the elementary and collegiate levels. But her life—and her mission—changed forever after the birth of her son Jack, and an abrupt, assumptive diagnosis experience. Determined to ensure future families would feel supported, celebrated, and connected, Carissa launched Jack's Basket in Jack's honor. Since then, over 11,000 families in 55 countries have received baskets filled with love, resources, and messages of hope. Carissa now leads her organization full-time and presents to healthcare professionals nationwide on how to deliver diagnoses without bias, while also engaging donors and volunteers who help carry out Jack's Basket's powerful mission. Topics Covered: What is Down syndrome and how it affects individuals and families Carissa's personal story of receiving Jack's diagnosis and the emotional impact The inspiration behind launching Jack's Basket What's inside a welcome basket and how it brings comfort to new families Carissa's advocacy for bias-free diagnosis delivery in medical settings Common misconceptions about Down syndrome Why early connection and community support are crucial Memorable moments from Jack's life and the families they've served Advice for new parents, healthcare providers, and loved ones welcoming a baby with Down syndrome Media highlights, including Carissa's appearance on The Kelly Clarkson Show and DNA Today podcast (Episode #333) Jack's Basket Resources: Jack's Basket Website Request a Basket Genetic Counseling Webinar: "Communicating Unexpected News"   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.

In this episode we are exploring two publications related to cancer care. In our first segment we talk to 2 authors about their research on genetic counselors and identification of patients for high-risk pancreatic cancer screening. In our second segment, Khalida interviews a genetic counselor about their study to evaluate surgical patient perspectives of genetic testing provided by a non-genetics professional.  Segment 1: “Practices and perspectives of genetic counselors about high-risk pancreatic cancer screening: A cross-sectional survey study” Amy Wiegand is a board-certified genetic counselor who specializes in cancer genetics. She graduated with her Master's in Genetic Counseling in 2017 from from the Icahn School of Medicine at Mount Sinai and has worked as a cancer genetic counselor at the Smilow Cancer Genetics and Prevention Program at Yale-New Haven Health since 2017 where she has seen over 2500 patients for a variety of hereditary cancer indications. Her research interests include hereditary pancreatic cancer and alternative delivery care models for genetic testing. Aparna is a senior genetic counseling assistant (GCA) at Smilow Cancer Genetics and Prevention Program at Yale New Haven Health where she has worked since 2019, and she has over 6 years of experience as a GCA. She holds a Master's degree in Biomedical Genetics and a Bachelor's degree in Biotechnology. She also has a varied background in administration, finance and customer service. She is a high-performing individual and was recently recognized by her colleagues as ‘Employee of the Quarter' and honored by the organization as ‘Smilow Star' for consistently going above and beyond for the patients and the co-workers and for exemplifying the health system's values. She contributes to the program in a variety of other ways outside of her role and works collaboratively with the team to create a patient centered environment. She has a strong interest in Cancer Genetics and is passionate about research. She is currently working on another research project, the abstract of which was selected for presentation in a Poster Session at 2025 ASCO (American Society of Clinical Oncology) annual meeting. She enjoys being part of a collaborative and dynamic team at Smilow Cancer Genetics and Prevention program and is excited about the upcoming research initiatives in the program. In this segment we discuss: - The significance of pancreatic cancer surveillance for high-risk individuals and why early detection plays a critical role in improving outcomes. - How genetic counselors are uniquely positioned to identify and refer individuals at high risk for pancreatic cancer, emphasizing their role in screening efforts. - An overview of the 2019 CAPS (Cancer of the Pancreas Screening) consensus guidelines and how they are applied to identify high-risk individuals for surveillance - The finding that nearly 70% of genetic counselors accurately identified individuals eligible for screening and discussed the factors that may have contributed to this high rate. - The association between provider comfort level and accuracy in identifying high-risk individuals, and discussed strategies to improve provider confidence and access to screening programs.   Segment 2: “Patient experiences of cancer genetic testing by non-genetics providers in the surgical setting” Katie Fiallos is a board-certified genetic counselor who earned her Master of Science in Genetic Counseling from the Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training program in 2017 and worked for seven years as a cancer genetic counselor at Johns Hopkins. She joined the Department of Medical and Molecular Genetics at Indiana University in August 2024. She is fluent in Spanish and provides genetic counseling in English and Spanish to participants with Parkinson's disease enrolled in the PD GENEration study. She has authored several academic papers related to genetic counseling, and her current research interests include provision of genetic counseling to Latine individuals, alternate service delivery models, and patient experiences with genetic testing and their informational desires. She lives in Michigan with her family and enjoys staying active, particularly practicing aerial silks. The research for the paper we're discussing was done while she was at Johns Hopkins and was funded by the Jennifer L. Brager Memorial Research award through the Johns Hopkins Kimmel Cancer Center.   In this segment we discuss: - Why hereditary cancer genetic testing is becoming increasingly important for patients with breast cancer, especially in relation to surgical decision-making. - The findings that patients preferred genetic testing at an existing appointment shortly after diagnosis, and explored how this timing affects their overall experience. - How many patients had already considered or wanted genetic testing before it was offered, shedding light on patient awareness and readiness. - Why patients were primarily motivated by concern for relatives and a desire for complete information, rather than surgical decision-making. - Gaps in patient-provider communication identified in the study and suggested ways for providers to address these issues in clinical practice.   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.    For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.    Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.  DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Sydney Arlen.

In this powerful episode of It Happened To Me, co-hosts Cathy Gildenhorn and Beth Glassman are joined by two fierce patient advocates and changemakers in the sickle cell disease community: Wunmi Bakare and Dima Hendricks. Both women are living with sickle cell disease and have transformed their lived experiences into platforms for storytelling, education, and change.   They are also the co-hosts of #ThroughTheGenes, a podcast that launched last year on World Sickle Cell Day (June 19, 2024). The show explores gene therapy and other innovative treatments for sickle cell disease while centering patient voices. With a second season debuting again on June 19th (exactly a month from today!), Wunmi and Dima continue to bring much-needed visibility to a condition that is often misunderstood and underfunded. And they will be joined by a new dynamic host, Christelle Salomon!   Topics Discussed: What is sickle cell disease and how it impacts daily life The emotional and physical toll of living with a chronic, invisible illness Medical gaslighting and how to advocate for yourself Finding community and realizing you're not alone Blending identity, advocacy, and creativity in the public eye Insights into gene therapy, including CRISPR technology and treatment considerations Health equity and why access to care must be a priority in the sickle cell space The power of patient-centered storytelling through #ThroughTheGenes podcast   During the episode Beth referenced a previous episode with someone who has pancreatic cancer, you can listen to Leslie Waldman's full interview on Episode 25 here.    Catch up with all of season 1 of #ThroughTheGenes podcast right now, before season 2 launches on World Sickle Cell Day on June 19th, 2025.    Both podcasts, It Happened To Me and #ThroughTheGenes are part of Gene Pool Media, the science podcast network. Be sure to check out all these science shows, many of which discuss medical challenges.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this powerful episode of It Happened To Me, hosts Beth Glassman and Cathy Gildenhorn are joined by author, advocate, and healthcare leader Laura Kieger, who shares her family's deeply personal journey with FAP (Familial Adenomatous Polyposis), a rare genetic condition that significantly increases the risk of colorectal and other cancers. Laura's memoir, Summer's Complaint, chronicles the emotional and medical challenges her family has faced across generations, from diagnosis and genetic testing to coping with loss and finding resilience. As someone who tested negative for the familial mutation herself, Laura also opens up about "survivor's guilt", the burden of watching loved ones endure cancer, and how her work in healthcare and leadership has informed her approach to caregiving and advocacy. Whether you're living with a hereditary cancer condition, supporting someone who is, or simply seeking to understand the human side of genetic risk, this episode offers insight, education, and compassion. Topics Covered: What FAP is and how it differs from other hereditary cancer conditions Laura's family's diagnosis journey and how it shaped their approach to screening and prevention The emotional experience of receiving a negative genetic test result when others in your family test positive The value of genetic counseling and early detection Misconceptions about FAP and what patients and families should really know How storytelling can raise awareness and build advocacy for rare diseases Highlights from Laura's memoir, Summer's Complaint, and what she hopes readers take away Laura Kieger is a healthcare human resources consultant, leadership coach, and author of Summer's Complaint. With decades of experience improving patient and employee experiences in healthcare settings, Laura brings both professional and personal insight to the conversation around rare diseases and inherited cancer risk. She's also a passionate advocate and speaker for organizations like the Ronald McDonald House and Care Partners.   Be sure to purchase your own copy of Laura's memoir Summer's Complaint; all proceeds go to continuing education credits for healthcare providers about hereditary cancer syndromes. During the episode Laura also mentioned a study about green bananas here and a private Facebook support group here.    Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.   

In this episode we feature 2 articles that explore hot topics in genetics as well as opportunities to improve patient care in honor of DNA Day on April 25. DNA day commemorates the completion of the Human Genome Project and the discovery of DNA's double helix. Both of these studies utilize qualitative methodologies to highlight people's experiences and share their stories. Segment 1: Not Parent Expected” results through direct-to-consumer genetic testing Julia Becker (she/her) is a board-certified genetic counselor and CSU Stanislaus Genetic Counseling Program graduate. She has a strong interest in the ethical, psychological, and social implications of genetic testing, particularly in the context of unexpected parentage discoveries. Julia is the first author of the article, "Experiences of Individuals Receiving ‘Not Parent Expected' Results Through Direct-to-Consumer Genetic Testing," published in the Journal of Genetic Counseling. She presented this research at the American College of Medical Genetics and Genomics (ACMG) Annual Conference in 2021, contributing to the ongoing dialogue on the impact of unexpected genetic findings. Her work focuses on supporting individuals navigating complex genetic discoveries and advancing awareness within the genetic counseling community. In this segment we discuss: - The rise in Not Parent Expected (NPE) discoveries through direct-to-consumer genetic testing and what it means to receive this result. - Key emotional themes from interviews with 25 participants, including identity disruption, grief without death, and shifting family dynamics. - How a background in genetic counseling informed a sensitive and in-depth interview approach. - The emotional motivations behind seeking out biological relatives and the varied outcomes of those efforts. - The need for improved informed consent and follow-up care from DTC companies.   Segment 2: Transgender and gender diverse patients' experiences with pregnancy-related genetics discussions: A qualitative study Jaime Schechner (she/her) works as a neurology genetic counselor at Boston Children's Hospital. She completed her Master of Science in Genetic Counseling at Boston University, and previously worked as a genetic counseling assistant at Beth Israel's Maternal Fetal Medicine Center. Darius  Haghighat (he/him) is a reproductive genetic counselor at Boston Medical Center and an Assistant Professor of Obstetrics and Gynecology at Boston University Chobanian & Avedisian School of Medicine. He has prior experience as a cancer genetic counselor as well. He completed his Master's in Genetic Counseling at Boston University. As a queer genetic counselor he is especially passionate about LGBTQIA+ health equity. In this segment we discuss: - The inspiration behind focusing the study on pregnancy-related genetic counseling experiences among trans and gender diverse (TGD) individuals. - Major gaps in reproductive healthcare for TGD patients, including misgendering, binary language, and lack of provider knowledge. - Participant stories about feeling unseen or misgendered, and discussed the emotional impact of these encounters. - Frustrations with terms like "maternal" and "advanced maternal age," and suggested inclusive alternatives for clinical language. - Moments of affirming care, showing how small gestures can have a powerful impact across the healthcare journey. - The need for systemic change, including inclusive policies, provider education, and future research that centers TGD voices. Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors. Stay tuned for the next new episode of DNA Dialogues! In the meantime, listen to all our episodes Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Dialogues”.  For more information about this episode visit dnadialogues.podbean.com, where you can also stream all episodes of the show. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.  Any questions, episode ideas, guest pitches, or comments can be sent into DNADialoguesPodcast@gmail.com.  DNA Dialogues' team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today's Kira Dineen. Our logo was designed by Ashlyn Enokian. Our current intern is Sydney Arlen.

Hosts Beth and Cathy sit down with Carrie Francis, a university student and passionate advocate for the blind, visually impaired, and deafblind communities. Carrie, born with a rare 5th-degree facial cleft, has overcome extraordinary medical challenges, including severe blindness and hearing impairment. Despite being told she wouldn't survive beyond her first week of life, Carrie has defied the odds and is now pursuing a Bachelor's degree in Psychology while dedicating her life to advocacy and community support.   Carrie shares her journey from childhood surgeries and speech therapy to navigating life as a deafblind person. She opens up about the misconceptions surrounding the deafblind community, the resilience required to thrive despite medical challenges, and the support systems that have helped her along the way.   This episode is a testament to the power of determination, the importance of advocacy, and the strength it takes to rewrite your story against all odds.   Key Topics Discussed: What is a cleft palate, and how does it differ from a cleft lip? The medical and emotional challenges of living with a 5th-degree facial cleft. Navigating life as a deafblind person: adaptations, family support, and advocacy. Overcoming misconceptions about the deafblind community. Carrie's journey to pursuing a degree in psychology and her advice for students with disabilities. Resilience and the factors that helped Carrie defy her initial prognosis. Impact of the Lions Foundation in Canada   Connect with Us:   Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Jaime Albright Henighan shares her family's journey after two of her sons, Joshua and Jorden, were diagnosed with a rare genetic kidney disease called APOL1-mediated FSGS (Focal Segmental Glomerulosclerosis).   Jaime's story highlights the importance of early detection, education, and advocacy for families navigating this challenging condition. She discusses her partnership with Nephcure, a patient advocacy organization, and her mission to raise awareness about FSGS, especially among individuals of West African descent, who are at higher risk due to the APOL1 gene mutation.   Topics Covered: What is FSGS?: Understanding APOL1-mediated FSGS and its impact on kidney health. The Family's Journey: How high blood pressure led to Joshua's diagnosis, and the shock of discovering Jorden had the same condition. The Role of Genetics: Why individuals of West African descent are at greater risk and the importance of genetic awareness. Early Detection: How identifying symptoms early has helped Jaime's sons manage their health. Advocacy and Education: Jaime's work with Nephcure and her efforts to raise awareness globally, including in Ghana. Parenting Through Challenges: Jaime's emotional journey as a mother and her advice for other parents navigating rare diseases.   Key Moments: Jaime explains how her family discovered FSGS and the challenges they faced in obtaining a diagnosis. Insights into the genetic factors behind APOL1-mediated FSGS and its prevalence in specific populations. Advocacy efforts to educate families and healthcare providers about the disease.   Guest Bio: Jaime is a wife and mother of six. Her family resides in Alpharetta, GA. She is also a Forensic Interviewer and Podcast Producer at Tenderfoot TV. In 2021, her seemingly healthy 17 year old son, Joshua, was randomly diagnosed with high blood pressure. This led to additional testing and a diagnosis of Focal Segmental Glomerulosclerosis (FSGS), a rare genetic kidney disease. Later that year, her 25 year old son, Jorden, was also diagnosed with FSGS. This was shocking to the Albright Henighan family. How could they be at high risk of a disease that they had never heard of? They connected with Nephcure, a patient advocacy organization, for support and resources. They learned that 1 in 8 people of West African descent are at risk of APOL1 mediated FSGS due to a genetic mutation. Thanks to early detection, her sons are stable today but this is a rare outcome for FSGS patients due to a lack of education and barriers in the medical community. They decided to share their story across the United States and even in Ghana. Their goal is to educate and empower others. If caught early, there are medical interventions and clinical research trials that can save native kidneys and lives. There is hope for FSGS patients.   Resources Mentioned: Nephcure Kidney International: Advocacy and support for families affected by kidney diseases. Information on APOL1-mediated FSGS and genetic testing. Tips for recognizing early symptoms of kidney disease.   Connect with Us:  Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Guest Amy Raskin shares her experience parenting a child living with type 1 diabetes (T1D) and celiac disease. Amy shares her personal experiences, the challenges her family has faced, and the strategies they've developed to support her son Andrew's health and well-being.   Amy Raskin is a pioneer in global thematic investing and widely respected as a bold thought leader. As the Chief Investment Officer of Chevy Chase Trust since February 1, 2014, she has propelled the firm to a leadership position in thematic investing, a small, but rapidly growing approach to investing that MSCI recently added to its universe of style categories. Under her leadership, Chevy Chase Trust has outperformed its global benchmark in each of the last nine years; it is in the top decile of managers for the last 10 years. Amy is also a monthly guest on CNBC.   Prior to joining Chevy Chase Trust, Amy was Senior Vice President at AllianceBernstein in New York, serving as Director of Research for Thematic Portfolios, Director of Research on Strategic Change, head of U.S. & Global Growth Equity Research and Chief Investment Officer of AB Venture Capital Fund. The Research on Strategic Change team published in-depth research papers on a wide range of thematic investment topics, such as broadband, China, hybrid vehicles, climate change and molecular medicine.   Earlier, she worked as an investment banker at Lehman Brothers and as a research analyst at Donaldson, Lufkin & Jenrette. Amy graduated from the University of Pennsylvania's School of Engineering and Applied Science with a Bachelor of Science in Engineering. She currently serves on the Boards of UPenn's Engineering School and of the T1D Fund, which is a venture capital fund focused on finding a cure to Type 1 diabetes.   Topics Covered: Understanding Type 1 Diabetes: What T1D is, how it differs from adult-onset diabetes, and the symptoms to look for. A Family's Journey: Andrew's diagnosis, the path to confirmation, and how the family adapted to his needs. Living with Celiac Disease: The symptoms, diagnosis, and how it intersects with managing T1D. Daily Life Adjustments: Modifying the home, navigating school and friendships, and encouraging independence. Sibling Dynamics: How Andrew's older brother, Jason, has adjusted to the care and attention Andrew requires. Advice for Parents: Amy's wisdom for families facing T1D, celiac, or other chronic conditions. Key Moments: Amy discusses the emotional and practical aspects of explaining T1D to her children. Insights into managing dual diagnoses of T1D and celiac disease. Strategies for balancing a demanding career with the complexities of parenting a child with chronic health conditions. Resources Mentioned: T1D Fund Camp Sweeney Break Through T1D  Findmeglutenfree.com Hole In The Wall Gang Camp   Connect with Us: Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

Welcome to this week's exciting episode of The Power of Owning Your Career Podcast! I'm thrilled to bring you a dynamic and insightful conversation with Kira Deneen, a seasoned genetics counselor and the brilliant mind behind the popular DNA Today podcast. And here's a special treat – this was a live recording! Head over to our YouTube Channel to watch the full episode. We're diving deep into Kira's fascinating career journey, exploring how her early passion for podcasting, sparked back in 2012, has seamlessly intertwined with her work in genetics. Listen as she shares her experiences on the profound impact of networking, overcoming career jitters, and the crucial role of consistent hard work. Kira also unpacks the unique insights she's gained from bridging her podcasting and scientific worlds, offering invaluable takeaways for anyone eager to accelerate their career. Whether you're curious about genetics counseling or simply seeking inspiration to own your career journey, this conversation is sure to leave you motivated and ready to take the reins of your professional life. Join us for an exhilarating and informative episode!   Connect with our guest, Kira Dineen, at  https://www.linkedin.com/in/kiradineen/   Connect with the show's host, Simone E. Morris, at https://www.linkedin.com/in/simonemorris/.   To apply to be a guest on the show, visit  bit.ly/pooycshowguest.   ✴️ Get More Support for Your Career:

Co-host Cathy Gildenhorn takes on the interviewer role to explore the personal story of her co-host, Beth Glassman. Beth shares her journey of living with a childhood autoimmune disease, offering insights into her diagnosis, its impact on her early life, and how it shaped her perspective as an adult.   On Episode #54, Beth interviewed Cathy about her journey to parenthood through infertility and adoption. Now, the roles are reversed as Cathy delves into Beth's experiences, highlighting the challenges, lessons, and resilience that come from growing up with an autoimmune condition called uveitis.    Topics Covered: Diagnosis and Early Understanding: Beth's initial diagnosis, symptoms, and how her healthcare providers and family explained the condition. Family and Social Dynamics: How her family responded to the diagnosis and whether Beth discussed her condition with friends, teachers, or counselors. Navigating Childhood and Adolescence: The impact of the disease on her education, sports, and ability to drive. Living with an Autoimmune Disease: Beth's thoughts on the potential for passing the condition to her children and how her vision has changed over time. A Healthy Lifestyle: How her childhood experience influences her approach to health and wellness today. Advice for Parents: Beth's guidance for parents raising children with health challenges.   Key Moments: Beth describes how her autoimmune disease affected her vision and how she explains it to others. The importance of open communication with family, friends, and educators about living with a chronic condition. Reflections on resilience and the power of support systems during childhood.   Connect with Us: Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com. 

In this heartfelt episode of It Happened To Me, we're turning the microphone inward as co-host Beth Glassman interviews her co-host and dear friend, Cathy Gildenhorn. Cathy shares her deeply personal journey through family planning, recurrent miscarriages, and adoption, offering hope and guidance to listeners navigating similar challenges. Cathy's story is one of resilience, love, and the transformative power of creating a family through adoption. From the emotional toll of miscarriages and ectopic pregnancies to the joy of welcoming her children into her life, Cathy provides an honest and inspiring look at her path to motherhood. Topics Covered: The emotional and physical challenges of recurrent pregnancy loss (miscarriages)  Understanding ectopic pregnancies and the medical procedures involved The role of hormones in fertility treatments and their potential health risks Deciding to pursue adoption: expectations, processes, and challenges Choosing an adoption agency and navigating the legal requirements Sharing adoption stories with children and discussing birth parents Reflections on the adoption experience and advice for others Cathy's openness and compassion shine through as she discusses how her experiences have shaped her perspective on family and advocacy. Whether you're considering adoption, struggling with infertility, or simply looking for an inspiring story, this episode is a must-listen. Resources Mentioned: Gladney Center for Adoption  National Council for Adoption The Barker Adoption Foundation  It Happened To Me's Episode #41 Colleen Gioffreda also shares her experience adopting children and helping other kids be placed with families.  Connect with Us: Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”.    “It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today's Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to ItHappenedToMePod@gmail.com.