The Health Design Podcast brought to you by the Journal of Health Design(www.journalofhealthdesign.com). Features interviews with the world's leading health design experts including clinicians, designers, patients, authors and researchers. Better health by design.
Mark Steven Porro, a New Jersey native (Exit 163), earned an Industrial Design degree from The Ohio State University. After years of agency work, his love of acting led him to Hollywood, where he appeared in dozens of television, film, and stage productions. Mark also spent his twenty-eight years in Tinseltown, entrepreneuring. He started five non-profit companies. But hold the applause, none were intended to be. He now lives in the South of France. But hold your pity. He of sound mind and body chose to suffer in the heart of wine country where the locals insist his French isn't so bad—at least that's what he thinks they're saying. Mark is an award-winning designer, writer, director, and now a best-selling, award-winning author. He has written lots of jokes, several screenplays, and one award-winning short film. A Cup of Tea on the Commode—a sad, sweet, and funny debut memoir—chronicles his multitasking adventures of filling his mother's last years with love, laughter, and joy. Though not always successful, he came pretty damn close. 2024 Best Indie Book Award Winner 2024 NYC Big Book Award Winner 2024 Paris Book Festival Winner 2024 Living Now Book Awards Winner 2024 International Book Awards Winner 2024 IndieReader Discovery Award Winner 2024 Book Excellence Award Winner 2024 Firebird Book Award Winner 2024 Eric Hoffer Book Award Finalist 2024 Readers' Favorite International Book Awards Finalist 2024 National Indie Excellence Awards Finalist 2024 American BookFest Awards Finalist “This author weaves his stories together, employing a wickedly humorous skill not unlike that of David Sedaris and Augusten Burroughs” — Five-Star Amazon review
An unexpected breast cancer diagnosis at 33 years old empowered Jessica Baladad to channel her experience into a mission that's changing the way women advocate for their medical care. The six-year cancer survivor created Feel For Your Life, a free mobile app that shows women how to perform self exams, track their progress and set monthly reminders. It's the first of its kind created by a breast cancer patient and has been downloaded tens of thousands of times all over the world. In 2024, Jessica implemented an AI feature into the app to help patients interpret and better understand pathology reports from their breast cancer screenings. Jessica's history with breast cancer catalyzed her dedication to build Feel For Your Life. She's the fourth generation on her paternal side of the family to be diagnosed with the disease, and yet, no known gene mutation has been found in her lineage. She first learned how to do a self breast exam after having a benign tumor removed at 18, and nearly 15 years later, Jessica was diagnosed with Stage 2B invasive ductal carcinoma after performing a routine self exam in the shower. She underwent 16 rounds of chemotherapy, a double mastectomy, 24 rounds of radiation, a hysterectomy and 10-hour flap reconstruction. Since launching the app, Jessica has expanded her advocacy into healthcare reform. She's helped write legislation in the State of Tennessee to promote risk reducing measures against cancer and disease. Billed as the Feel For Your Life Act, it requires high school students to learn about self breast exams, testicular exams and skin exams. Jessica has been featured on Good Morning America, Tank's Good News, USA Today, Yahoo News, UpWorthy and several national and international media outlets. She's worked with the NFL on their Crucial Catch Campaign to promote cancer screenings, received the Hometown Hero Award from Ponce Law on Nashville's Fox 17, has been recognized by the National Breast Cancer Foundation for her leadership initiatives and was the recipient of the Mona Lisa Foundation Grant in 2023. When Jessica isn't working on patient advocacy, she enjoys traveling and exploring new places, attending sporting events with her husband and photographing animals.
Emily is the Founder and CEO of Attane Health, a digital health company in the “food is medicine” space. Rooted in lived experience, Emily leads a passionate team dedicated to changing health outcomes through harnessing the healing power of food. After experiencing first-hand the challenges of managing chronic health conditions with limited resources, Emily founded Food Equality Initiative (FEI). Under her leadership the nonprofit grew to a 7-figure annual budget, supporting patients' access to healthy food. Emily is a national patient advocate who has provided both oral and written testimony to the FDA and USDA. Active in her community, Emily serves on several hospital committees and food policy coalitions. A member of the 2025 Child and Adult Core Set Annual Review Workgroup, Emily works to advance health equity in all pursuits. Her research interests include food systems, health disparities, and patient-centered approaches to care. Emily is a published co-author of several peer-reviewed articles with top research institutions in allergic disease. Emily believes in the power of patients and data to achieve greater health outcomes.
Mahwish Syed is an award winning fashion and interior designer, celebrated author, cancer survivor, and devoted mother. Her creations have adorned bodies and homes for over two decades, fostering spaces that nurture and heal. Featured in distinguished publications like New York Times, Architectural Digest, Elle Décor, and Hamptons Cottages & Gardens, her designs transcend boundaries. Her book "Purgatory to Paradise" unveils her triumphant cancer journey, showcasing how design became her healing sanctuary. Committed to empowering others, she advocates for personal paradises, affirming that genuine beauty is immediate and attainable for all. 1. http://www.msd-ny.com/press 2. https://elephantsandtea.com/survivorship/you-are-not-alone-and-i-love-you-too https://www.digitaljournal.com/pr/news/prodigy-press-wire/mahwish-syed-on-nature-informed-homes-with-meredith-oke-on-quantum-biology-collective-podcast 3. https://www.architecturaldigest.com/story/15-decorators-create-delightful-scenes-inside-the-brooklyn-heights-designer-showcase 4. https://www.brownstoner.com/interiors-renovation/interior-design-trends-brooklyn-forties-fever-curves-facets-fringe-velvet-lighting-furniture/ 5. https://twistoutcancer.org/art/mahwishsyedandsherylannnoday/ 6. https://www.heyartifact.com/creations/912XN/
Mary I. O'Connor, MD is founder and Chief Medical Officer of Vori Health, a virtual musculoskeletal company focus on transforming the delivery of patient-centered and value drive care. She is a nationally recognized leader in health equity and Chair of the Board of Directors of Movement is Life, a nonprofit multi-stakeholder coalition committed to addressing musculoskeletal health disparities. Her new book, “Taking Care of You: The Empowered Woman's Guide to Better Health,” supports women advocating for equitable healthcare. A past Olympian (US Women's Rowing), she is passionate in her promotion of the power of sports for girls and women. Dr. O'Connor is Professor Emerita of Orthopedics at Mayo Clinic and past Professor of Orthopaedics and Rehabilitation at Yale School of Medicine. She received her MD from Drexel University and completed her residency in orthopedics and fellowship in orthopedic oncology at the Mayo Clinic in Rochester, MN. She practiced at Mayo Clinic in Florida until 2015 during which time she served in many leadership roles: Enterprise-wide Medical Director of the Office of Integrity and Compliance; Chair, Orthopedic Surgery Department (Florida); Medical Director for Development (Florida); and member of the Executive Operations Team (Florida). In 2015, she became the inaugural Director of the Center for Musculoskeletal Care at Yale School of Medicine and Yale New Haven Health. In February 2021, Dr. O'Connor became a founder and Chief Medical Officer at Vori Health to advance her passion for transforming musculoskeletal care. Dr. O'Connor has published extensively on clinical research and innovation in care pathways, hip fracture care, limb salvage for tumor, sex and gender differences in arthritis, and regenerative medicine. At Yale, she led the creation of a multidisciplinary hip fracture program which transformed clinical outcomes and promoted innovation in the care of this vulnerable population. She authors a quarterly column in Clinical Orthopaedics and Related Research entitled, “Equity360: Gender, Race and Ethnicity,” to advance health equity in the orthopedic profession. She has broken numerous gender barriers as the first female member of the Musculoskeletal Tumor Society (MSTS), the International Society of Limb Salvage (ISOLS), the American Association of Hip and Knee Surgeons (AAHKS) and The Knee Society. She is the Past President of the Association of Bone and Joint Surgeon, AAHKS, ISOLS, MSTS and the Ruth Jackson Orthopaedic Society. She is past Chair of the American Academy of Orthopaedic Surgery (AAOS) Diversity Advisory Board and the AAOS Women's Health Issues Advisory Board, founding member of the AAHKS Women in Arthroplasty Group, past board member of the Perry Foundation, and member of the AAHKS Diversity Advisory Board. She is past member of the Advisory Committee on Research on Women's Health at NIH. Dr. O'Connor has received numerous awards and honors during her training and career, including the 2023 AAOS Diversity Award, 2023 AAHKS Diversity Award, Distinguished Clinician Award at Mayo Clinic, and the Corinne Farrell Award from the International Skeletal Society. She received the Congressional Gold Medal as a 1980 Olympian (Women's Rowing). Company: https://www.vorihealth.com LinkedIn page: https://www.linkedin.com/in/maryoconnormd/ TEDx: Promoting Health: Your Secret Superpower https://www.ted.com/talks/mary_o_connor_promoting_health_your_secret_superpower Book: https://mcpress.mayoclinic.org/product/taking-care-of-you/ https://www.amazon.com/Taking-Care-You-Empowered-Womans/dp/1945564148 Movement is Life (the non-profit focused on health equity): https://www.movementislifecommunity.org
Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab. She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation and she directed the health portfolio at the Pew Research Center's Internet Project.
Tina M. Baxter, an advanced practice registered nurse and board certified gerontological nurse practitioner based in Anderson, Indiana, has over 20 years of experience as a registered nurse and 16 years as a nurse practitioner. She owns Baxter Professional Services, LLC, specializing in legal nurse consulting, wellness coaching, and healthcare educational resources. Tina hosts a weekly Facebook live program, teaches stress management, and offers virtual classes. She founded The Nurse Shark Academy to mentor nurses in business, and is a certified small business advisor with LegalShield. She's a frequent speaker and contributor to various media outlets. Currently, Tina works at Adult and Child Health focusing on mental health for adults and geriatric patients. She has a Master of Nursing and post-master's certification from the University of Indianapolis, and serves on multiple boards and associations. Social Media Links https://linktr.ee/baxterprofserv
David E. Montgomery is a board-certified cardiologist focusing on preventing heart disease at PREventClinic in Atlanta, where he is the founder and managing partner. Dr. Dave is also a sought-after TV personality, frequently appearing as a medical contributor on CNN/HLN and NewsNation. Dr. Dave was selected by his peers in Atlanta Magazine's Top Doctors in 2022. Dr. Dave is the host of the web series, The Good Doctor TV, and the podcast, The Health Mastery Café with Dr. Dave. He believes that mass media and social media can play a key role in enhancing people's health everywhere. Weblinks: YouTube: youtube.com/TheHealthMasteryCafe Practice website: https://www.preventatl.com
Epiphany Jordan, MPH, CPH, is on a mission to rebrand human touch. From 2013-2020, she provided platonic touch therapy in a ritualized setting with her business, the Austin-based Karuna Sessions. She is also the author of Somebody Hold Me: The Single Person's Guide to Nurturing Human Touch. Somebody Hold Me addresses the touch deficit singles face, and offers multiple solutions. She has appeared on several podcasts discussing human touch, and spoke about solving loneliness with human touch at Austin's SXSW Interactive Festival in 2019. In 2023, she completed her Master of Public Health with a concentration in Social Marketing from the University of South Florida, and researched rebranding human touch as part of her program. She has been a journalist, a legal assistant, an event planner, a professional tarot reader, an advice columnist, a cigarette girl, and a gig economy serf. http://www.nurturinghumantouch.com Twitter: @karunasessions IG: somebody_hold_me FB: https://www.facebook.com/karunasessionsatx https://www.facebook.com/somebodyholdme/
Lori Abrams has been a consultant for the past year and a half, helping Organizations accomplish representation in their clinical trials. This has been achieved by developing patient and community focused Diversity Strategy Action Plans, incorporating the patient and caregiver's voice into decision-making, and bringing tangible solutions to the visible and invisible barriers that prevent representative recruitment and retention. Her last role was Vice President of patient advocacy and clinical research diversity at WCG. Abrams and her team worked to ensure that each clinical trial enrolled a diverse group of patients from underserved populations by facilitating culturally appropriate dialogue between patients, care providers, community members and trial stakeholders. The feedback and interactions from these groups garnered significant recommendations for the sponsors, but importantly, empowered diverse community members. The Team also worked with several pharmaceutical companies to develop Diverse Strategy Action Plans both for the Sponsor and the sites. As the Director of Advocacy, Diversity & Patient Engagement in Global Development Operations at Bristol-Myers Squibb (BMS) she has built a Team that developed innovative and unique advocacy approaches that brought BMS clinical trial awareness and accessibility to patients, physicians, and caregivers. The Team also developed many relationships with minority-focused health and community-based organizations, to increase diversity in BMS clinical trial populations. The Team also focused on educating the internal BMS workforce on the barriers, concerns and daily life of patients and caregivers. This was achieved through quarterly “Voice of the Patient” seminars, art shows by patients, patient videos and internal teleconferences where colleagues could ask the Team questions. Lori came to Bristol-Myers Squibb in 1998 as a Sr. Clinical Scientist in the Virology Group. During her first six years she was the Clinical Working Group Lead on both Videx EC and Reyataz. She joined the Drug Development Learning & Collaboration Team in 2003 managing a team of learning professionals. Prior to joining BMS, Lori was both a study coordinator in HIV/AIDS related clinical trials and a patient advocate at the National Institutes of Health and the Henry M. Jackson Foundation for Military Medicine. Lori partnered with many patient advocacy organizations to bring the plight of the military's HIV program to the public and integration into the HIV/AIDS overall arena. Additionally, she successfully lobbied Congress to gain support for the military's HIV Program and obtained an increase in funding of 20 million per year. Her work was recognized with a nomination by Congressman Steny Hoyer (House Majority Leader) to be a delegate to the White House Conference of HIV/AIDS, and an award on World AIDS Day by Congresswomen Constance Morella. Lori completed her undergraduate studies at the University of Maryland and received a Graduate Certificate in Organization Development from the NTL Institute for Applied Behavioral Sciences.
Jill Wener, MD is a board-certified Internist, certified EFT/tapping practitioner and trainer, anti-racism educator, DEI consultant, trauma specialist, allyship coach, expert in physician wellness, and Co-Founder and Partner at Conscious Anti-Racism, LLC. She is also a proudly anti-Zionist Jew, and is dedicated to fighting for freedom for people of all identities. Jill is passionate about helping people take responsibility for their problems and teaching them practical, easy, rewarding, and trauma-informed tools to take self-improvement to the next level. Jill is the co-creator of the CME-accredited Conscious Anti-Racism training programs, the host of the Conscious Anti-Racism podcast, and the co-author of the best-selling Conscious Anti-Racism book. She has created CME-accredited EFT/tapping and meditation courses. Jill has worked with clients such as Georgia Aquarium, Yale University, the Accreditation Council for Graduate Medical Education, Seattle Children's Hospital, Centene, Santa Clara Medical Society, Rush University Medical Center, ChenMed, the Pittsburgh Business Group on Health, Emory University, Atkins Global, and the National Alliance for Healthcare Purchaser Coalitions. You can connect with her on Instagram and LinkedIN @jillwenerMD, as well as on her website www.jillwener.com.
Eric Fisher is a Candian certified counsellor with over 13 years experience working in inpatient and outpatient treatment environments. Originally from the US, Eric specializes in helping those with addiction and trauma. He operates his private practice, Recovery Arts Counselling, in Calgary, AB.
Brain cancer significantly impacts marriages, often increasing the risk of divorce. According to research published in the journal Cancer, women are six times more likely to end up separated or divorced if they are diagnosed with cancer ... than if their husbands were facing the same illness. The study suggests, "Early identification (marital discord) and psychosocial intervention (life coaching) might reduce the frequency of divorce and separation, and in turn improve quality of life and quality of care." The stress and emotional toll of a brain cancer diagnosis can strain even the strongest relationships. This is where Aware Coaching comes in. Services Offered: Relational Health: Coaching for those dealing with brain cancer diagnoses, fostering emotional, spiritual and relational resilience. Speaking: Jason and Tracy share their inspiring brain cancer story and expertise on marriage, parenting during illness, navigating the health system, and healing from trauma, providing hope and practical guidance to audiences. Devotional for Women: Tracy Binder's book, Shine On: A Devotional of Encouragement for Women Who Feel Broken, offers bite-sized doses of encouragement and spiritual guidance for women navigating their healing journey.
Based in Colorado, Risa August is an author, Speaker, Gestalt practitioner and Patient Advocate for rare pituitary diseases. She has been sharing her story for the past five years, and more recently in her memoir The Road Unpaved – Border to Border with a Brain Tumor and a Bike. In addition to speaking at conferences for leaders in pharmaceuticals, medical professionals, and patients, her work is published on blogs and in other smaller publications. Her most popular personal essay, “Marshmallow Clouds,” has been translated into Spanish. Through her personal transformation, Risa has learned and practiced removing limiting beliefs, shifting her perspective, and embracing a full life. Risa has a B.A. in geography, a certification in the Gestalt Coaching Method, and a certificate in mindfulness-based cognitive therapy. She has been living with a pituitary tumor and rare disease for over a decade and offering words of inspiration and information to audiences in hopes of saving others from heading down a bumpier road. A girl with sparkles in her hair and once an Ironman athlete, Risa still has a passion for her bike and barbells. With her genuine curiosity and love for trying new (and old) things, you may find Risa taking Bollywood or hip-hop dance lessons, trying a silks aerialist or boxing class, going indoor skydiving, or guiding an inspirational workshop in creativity.
Rucha Shah attained her Master of Science degree in Clinical Research Organization and Management from the Drexel University School of Medicine in Philadelphia, PA. She further completed certificate coursework in Advancing Health Equity from ECOG-ACRIN Cancer Research Group and Research Advocacy Network as well as certificate coursework in Artificial Intelligence in Pharma and Biotech from the Massachusetts Institute of Technology. Currently, Ms. Shah works as a clinical research project manager within the oncology space, an area in which she has a decade of experience. She has proven experience in managing study teams and study sites as well as working collaboratively with various functional teams to meet study deliverables. Additionally, Ms. Shah's passion lies in advocating for accessible healthcare and improving health outcomes for the broader patient community, especially the next generation of patients. Currently, Ms. Shah leads an advocacy group for patients and caregivers at the Children's Hospital of Philadelphia and the Hospital of University of Pennsylvania. She also collaborates with like-minded organizations and pharmaceutical companies on bringing forth initiatives which make meaningful connections within the disease community, improve the quality of life for patients and to increase awareness within the larger community. She strives to apply the "lessons learned" from her patient advocacy experiences to her professional work by building the trials to be more patient centric and accessible. Recent Works: Woolford T, Andemariam B, Blaylark R, Colasanti R, Shah N, Jonassaint C, Trimnell C, Sheth S, Davis J, Gallagher E, Zaidi AU, John H, Shah R. Setting Industry Standards for Patient Engagement, Partnership and Care: The Patient Vision Project. Poster and Oral presentation at NORD. October 16, 2023. Washington DC, USA.
Dr Sondra Butterworth is a visionary leader and advocate for equality, diversity, and inclusion (EDI). Sondra's work is particularly focused on inequalities within health and social care sectors for rare disease patients and communities in the global majority (ethnic minority). As a British born black black woman, with Afro-Caribbean roots tracing back to St. Kitts, Sondra's parents moved to the UK as part of the Windrush generation. They instilled in Sondra a strong work ethic, and a sense of resilience, community empowerment, and a passion for humanitarian work. As one of the very few black Community Psychologists in the UK, Sondra brings her expertise in mixed-methods research, education, and EDI to lead groundbreaking initiatives like EDIRA (Equality, Diversity, and Inclusive Research Association) EDIRA Academy: which is an online platform for learning and networking, RCNet (RareQoL Community Network) and MELD (Minority Ethnic Leadership Development). Sondra's work has impacted countless individuals by advancing initiatives to improve health equity and address barriers to inclusion. Sondra was recently recognized with the prestigious Best DEI Social Enterprise Founder 2024 (UK) title by the Global CEO Excellence Awards, solidifying her role as a trailblazer in DEI and social enterprise leadership. This award celebrates her tireless dedication to building more inclusive frameworks within research, healthcare, and social services. RareQoL Consulting offers consultancy services to not-for-profit organizations, healthcare providers, and the pharmaceutical industry. Celebrating the ‘Doers' Event Join Us at ‘Celebrating the Doers' Event – November 7, 2025 Dr. Butterworth and EDIRA Partners will host the ‘Celebrating the Doers' event on November 7, 2025, at the University of Birmingham, UK. This event, a hallmark of EDIRA's mission, shines a spotlight on individuals and organizations that are actively driving positive change in research and social care. Attendees will have the opportunity to engage with EDI professionals, policymakers, and community leaders to discuss best practices, celebrate achievements, and network with others passionate about inclusion. For more information about Dr Sondra Butterworth and her groundbreaking work with RareQoL and EDIRA, or to attend the ‘Celebrating the Doers' event, visit EDIRA. https://rareqol.com/edira-2/ Consultancy Services Sondra's ability to understand the complex dynamics of diversity and inclusion has made her a sought-after consultant, known for her clear, actionable strategies. Whether your organization is looking to improve its EDI framework, engage in inclusive research, or develop leadership programs, Dr. Butterworth is ready to provide support that drives real, lasting change. Get in touch today to discover how her consultancy services can help your organization achieve its goals. For more details on how Dr. Sondra Butterworth can support your organization, visit https://rareqol.com/rareqol-consulting/
Dr. Rachna Rekhi is a board certified pediatrician and lifestyle medicine physician. Prior to attending medical school she earned a degree in Food Science and Human Nutrition from the University of Florida. After university, she worked as a researcher in the Cardiology Department at Stanford University. She had aspirations of becoming a cardiologist until she attended medical school at McGill University in Montreal, Canada and had a revelation that many adult diseases begin in childhood. After that she focused her energy on becoming a pediatrician in hopes of influencing families to adopt healthier habits at a young age. She has worked at Kaiser Permanente, a large healthcare system, for 13 years. During this time she recognized that children are capable of making great choices about their health if they have the proper knowledge, and they need to be a part of the conversation about their health. She believes that children have the power to influence the adults in their life to be healthier. She co-hosts a podcast called Wellness Wizards with her 9 year old son and 11 year old daughter, where they discuss, simplify, and gamify lifestyle medicine topics including primarily plant based nutrition, physical activity, restorative sleep, reduction of risky substances, social connectedness, and stress reduction. She loves traveling and cooking healthy food with her children. Last year the family took a year off and traveled to 19 countries together, and since then they have made it a goal to travel to all 7 continents together. You can follow their channel at https://www.youtube.com/@wellnesswizardsofficial. You can also check out their audio podcast here: Spotify: https://open.spotify.com/show/0EFWUCmNamD6pLJimbOJxU?si=5de277020f3147ed Apple Podcast: https://podcasts.apple.com/in/podcast/wellness-wizards/id1713230846 Amazon: https://www.amazon.in/Wellness-Wizards/dp/B0CLKW18P1 Wellness Wizards Youtube Spotify Apple Podcast
Melanie Brooks is the author of the memoir A Hard Silence: One daughter remaps family, grief, and faith when HIV/AIDS changes it all (Vine Leaves Press, 2023) and Writing Hard Stories: Celebrated Memoirists Who Shaped Art from Trauma (Beacon Press, 2017) She teaches creative nonfiction in the M.F.A. program at Bay Path University and in the M.F.A. program at Western Connecticut State University and professional writing at Northeastern University. She holds an M.F.A. in Creative Nonfiction from the University of Southern Maine's Stonecoast writing program and a Certificate in Narrative Medicine from Columbia University. She has had numerous interviews and essays on topics ranging from loss and grief to parenting and aging published in the The Boston Globe, HuffPost, Yankee Magazine, Psychology Today, The Washington Post, Ms. Magazine, Creative Nonfiction, and other notable publications. She lives in New Hampshire with her husband, two children (when they are home from university), and chocolate Lab. Website: https://www.melaniebrooks.com/ ‘A Hard Silence' book from: https://shorturl.at/ipHQ4
Megan-Claire Chase, aka Warrior Megsie, is a patient advocate and breast cancer survivor from Atlanta, Georgia. Her blog, Life on the Cancer Train, is famous for being authentic, raw, and informative, with a twist of humor, where she shares her experiences of being a young adult cancer survivor while advocating for better treatments and resources. The blog is syndicated on Cancer Health Magazine's website. Megan-Claire is a highly sought-after blogger and influencer in the cancer community nationally and internationally. In 2023, Megan-Claire was featured in Stories from the Stage episode "Beyond Cancer," which aired on PBS and World Channel. Currently serves on Bayer Oncology's Digital Patient Council, and the Oncology Data Advisory Editorial Board, and is a Board Member for the LYTE Foundation. She hosts two podcasts, The Other Side of Cancer and Our BC Life, and ongoing collaborations with Teen Cancer America to create inclusive content for social media and patient-facing collateral. Megan-Claire co-authored abstracts and presented posters, including Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com), and The Impact of Triple-Negative Breast Cancer in Black Women at the San Antonio Breast Cancer Symposium in 2023, and "You don't really have a say in anything...like you don't have any options": AYA Cancer Survivors' Perspectives on Fertility Preservation Conversations with Healthcare Providers presented at the 16th Annual American Psychosocial Oncology Society (APOS) in 2019 and accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the annual meeting of the Society for Adolescent Health and Medicine and published in the medical journal Psycho-Oncology. Megan-Claire's work is featured in several publications, including Cancer Health, Cancer Today, CURE Magazine, Count Me In, Everyday Health, Elephants and Tea, Dating Roo (UK), Voyage ATL, Humor Beats Cancer, IHadCancer.com, RETHINK Cancer, Pharmaphorum (UK), and WebMD. Blog: Life on the Cancer Train at www.warriormegsie.com Social Media Links: Instagram - https://www.instagram.com/warriormegsie/ Twitter - https://twitter.com/warriormegsie LinkedIn - https://www.linkedin.com/in/megan-claire-chase/ Other Links to Projects/Articles: Stories from the Stage on PBS and World Channel episode: Beyond Cancer Watch here. Cancer Health magazine: You Can't Escape Race in Cancer Read here. Oncology Data Advisor: AYA Cancer Awareness Week: Creating Welcoming Spaces for Support and Advocacy With Dr. Lauren Ghazal, Megan-Claire Chase, and Allison Rosen Listen here. The Patient Story: Megan-Claire's Breast Cancer Story: My Symptoms Were VERY Different Watch here Pfizer: Genetic Testing in Metastatic Breast Cancer in the USA: A Podcast | Oncology and Therapy (springer.com)
Joy Rios, MBA, stands as a distinguished Health IT strategist and a recognized expert in value-based care payment models. Celebrated for her pioneering spirit, Joy was awarded the 2023 HIMSS Changemaker of the Year award for her significant contributions to women in health IT, underscoring her commitment to diversity, equity, and inclusion in the healthcare sector. As founder and host of the "HIT Like a Girl" podcast, and the Like a Girl Media agency, Joy is dedicated to elevating diverse voices and advancing DEI initiatives within healthcare. Her expertise not only bridges gaps between health and technology but also champions the creation of equitable healthcare environments.
Sean Wachter's life is a remarkable narrative of resilience, determination, and transformation. After overcoming a life-changing accident, Sean faced a grueling health battle that led to the discovery of a golf ball-sized lesion in his cerebellum. Despite a challenging journey through misdiagnosis and the eventual confrontation with Stage 4 melanoma, including brain metastases and leptomeningeal disease, Sean's spirit remained unbroken. An accomplished former two-sport collegiate athlete and professional football player, Sean has channeled his relentless energy into professional wrestling, turning it into a platform for raising awareness and funds for cancer research. His return to the ring is not just a personal triumph but also a powerful gesture of defiance against his medical challenges. Beyond the ring, Sean's endeavors extend to significant charitable work. He collaborates with notable organizations like The V Foundation, the Melanoma Research Alliance, and Memorial Sloan Kettering Cancer Center, contributing to brand awareness and fundraising efforts. His journey is a poignant reminder of the power of resilience and the profound impact one can have in the face of adversity. Sean's story, highlighted by his remarkable return to professional wrestling, is a testament to the strength of the human spirit. He embodies the essence of not just surviving but thriving, inspiring countless others with his journey.
Nancy (she/her) is Breast Cancer Prevention Partners' (BCPP) Director of Program and Policy and works at the state and federal levels to advance public policy to reduce exposures to toxic chemicals. Before joining BCPP, Nancy spent over 20 years in Washington DC advocating for numerous causes, including civil rights for women and the GLBTQ+ community. She graduated from the University of Pittsburgh with a Bachelor of Science in Biology and earned a Masters degree in Biological Oceanography from the University of Connecticut. Nancy is an avid outdoors person, spending her spare time hiking and birding in Northern California and beyond. In the 13 years Nancy has worked for BCPP, she has focused on several issues related to breast cancer prevention including strengthening the country's broadest law governing synthetic chemicals – the Toxic Substances Control Act; implementation of the ban on several phthalates in toys and childcare articles; and advocating for federal resources to support the National Institute of Environmental Health Sciences and environmental health programs at the Centers for Disease Control and Prevention, including the biomonitoring and health tracking programs. Her more recent experience has focused specifically on state legislative work, including BCPP's co-sponsorship of legislation to remove toxic chemicals from plastic products, require the disclosure of ingredients in cleaning, and banning forever per- and polyfluoroalkyl substances (PFAS) from firefighting foams, paper-based food packaging, and textiles. Breast Cancer Prevention Partners is a science-based national organization working to eliminate toxic chemicals and other environmental exposures linked to breast cancer. You can learn more about Nancy, BCPP, and ways to get involved at www.bcpp.org. Find us on our various socials: Instagram: www.instagram.com/bcppartners X: twitter.com/BCPPartners YouTube: www.youtube.com/c/BreastCancerPreventionPartners TikTok: www.tiktok.com/@bcppartners LinkedIn: www.linkedin.com/company/breast-cancer-prevention-partners
Jade Gibson's connection to cancer presented itself at the age of 16 when she was diagnosed with late-stage ovarian cancer. The experience ignited a desire to help individuals and families affected by cancer, leading her to pursue studies at the Harold P. Freeman Patient Navigation Institute. There she received education on the newly developing field and learned how to apply the navigation model to eliminate common barriers for patients moving through the healthcare system. To date, Ms. Gibson has entered her 19th year of survivorship – lending her voice to address disparities that plague historically marginalized AYA patients from rural communities. As a champion for cancer advocacy, she participates in interviews, virtual conferences, webinars, marketing research, and fundraising. Additionally, serving in the following capacities: • Committee member for the Georgia Cancer Control Consortium (GC3) Survivorship Workgroup and Georgia Prostate Cancer Roundtable Steering Committees. • Patient Centered Outcomes Research Institute (PCORI) - Adolescent Young Adult (AYA) Advisory Panel project focusing on identifying barriers to recruiting and engaging underrepresented adolescent and young adults in cancer survivorship research. • BVOGUE participant in the “Centering the Marginalized Voices of Black Patients with Gynecological Cancer as a First Step in Healthcare Curriculum Development,” study supported by MOQC (the Michigan Oncology Quality Consortium). • Ovarian Cancer patient expert with Merakoi, creating healthcare solutions to benefit people living with a chronic illness. • Citizen Scientist for the Ovarian Cancer Outreach with the “Connecting Families to Overcome Ovarian Cancer” study led by Emory University.
Denise's career in healthcare began in a critical access hospital in Washington state and expanded to serve organizations large and small across the US. After working in non-profit and for-profit healthcare sectors and the last decade in patient experience, Denise is now working to Make a Ruckus That Makes a Difference in healthcare. She brings her expertise, passion for serving frontline leaders and employees, and entrepreneurial spirit to every conversation. Denise encourages those she works with to think differently, create synergistic collaborations, develop relationships and connections beyond their organizations and profession, and, of course, make a ruckus.
Dr. Winemaker is a graduate of McMaster University Medical School. She has completed residency training in Family Medicine, and fellowship training in Palliative Medicine. Her clinical work is predominately community based, caring for people in their home. She is an associate clinical professor at McMaster University in the Department of Family Medicine, Division of Palliative Care. She has held multiple leadership roles including McMaster Postgraduate Curriculum Lead, Hospice Medical Director, Regional Palliative Clinical Lead and Medical Lead Palliative Care Outreach Team. She is an active educator and researcher. Most importantly, Dr. Winemaker is an advocate for palliative care reform. She believes strongly that basic principles of palliative care should be the responsibility of all health care providers and integrated into care seemlessly, upstream in the patient's illness journey. She is the co-creator of the social movement called The Waiting Room Revolution, the co-host of the Waiting Room Revolution podcast, co-authour of the book Hope For The Best Plan For The Rest: 7 Keys for Navigating a Life-Changing Diagnosis, and very active voice on multiple social media platforms. She has won numerous awards for her leadership and palliative care education for health care professionals.
Sjögren's Syndrome patient and patient research partner for rheumatic diseases.
Salih Hendricks is a South African Diabetes Amputee Advocate and shares his lived experience with many around the world on platforms like, DEDOC.org, WHO, IDF, Diabetes South Africa, Diabetes SA Advocacy, American Limb Preservation Society, Bromley Diabetes UK Peer Support Group. He is a Board Member of Diabetes South Africa and South Africa Diabetes Advocacy. He does Peer Support and motivational talks on awareness and prevention of diabetes complications and amputations. He is always promoting diabetes education with awareness and prevention. https://www.instagram.com/salihhendricks/ https://www.youtube.com/watch?v=pXrk-c_zXTU https://www.thewaytomyheart.org/ https://www.who.int/news-room/events/detail/2021/11/23/default-calendar/ncd-hard-talk-webinar-comprehensive-diabetes-management https://idf.org/what-we-do/advocacy/advocacy-networks/blue-circle-voices/bcv-stories/salih-hendricks-south-africa/ https://limbpreservationsociety.org/news/alps-features-salih-hendricks-a-diabetic-and-amputee-advocate/ https://www.diabetessa.org.za/dsa-news-autumn-2022/ https://www.diabetesadvocacy.org.za/board-members https://sweetlife.org.za/life-as-a-diabetic-amputee/
Passionate. Unique. Loyal. Resilient. These words are commonly used to describe Sharron S. Rouse. Sharron is an experienced leader with a demonstrated history of working in the education and nonprofit industries. She is skilled in program coordination, leadership, community outreach, and curriculum development. A native of the Washington, DC Metropolitan area, she has dedicated her life to influencing the world as a kidney disease, dialysis, and now transplant survivor. Sharron actively shares her story to bring hope and healing to anyone facing difficult circumstances in life. In 2022, she started SR Consulting Services LLC to provide support and guidance to educational and healthcare businesses and organizations. To expand the scope of her reach, Sharron founded Kindness for Kidneys International, Inc., a nonprofit organization committed to educating, encouraging, and empowering kidney warriors and their families. With the support of the community, Kindness for Kidneys has gained national attention for their monthly support groups, kidney education program, and annual holiday drives. Sharron remembers what it was like to be on dialysis during the holiday season, which is why Kindness for Kidneys serves over 500 kidney warriors and counting each year. Their annual Holiday Drive has been featured on local ABC and NBC news outlets. Sharron has been a guest speaker for several national and international educational and business-related conferences. She currently serves on the NIH/NIDDK Safety and Monitoring Board for the System Interventions to Achieve Early and Equitable Transplants (STEPS) study, Women of Color in Pharma – TRUST Advisory Board, Quality Insights ESRD Network 5 Patient Advisory Council, Bayer FINE-ONE Standing Patient Council, Health Union Patient Leadership Council, and the Vertex Patient Advisory Board. As an ambassador for the American Association of Kidneys Patients (AAKP) and the American Kidney Fund, she has participated in many patient panel discussions, served as a guest speaker, exhibitor, and Co-Chair for the 2019 and 2020 AAKP National Patient Meetings, was a peer mentor for dialysis warriors at Emory University Hospital, and has represented the state of Maryland for Capitol Hill advocacy days in Washington, DC. Sharron's hard work and devotion to serving the community has granted her numerous awards including the Presidential Volunteer Service Award in 2020 and 2022, Who's Who in American Education recognition, Honorable Mention for the Lyfebulb/CVS Kidney Care Innovation Challenge, the AAKP Support Group of the Year award, the Second Chance Show's Prima award, and the 2023 Health Union Community Cultivator award. Sharron lives in Maryland with her husband Shawn and daughter Kyla. Website: www.kindnessforkidneys.org
Dr Chrysopoulo ("Dr C") is a board certified plastic surgeon, breast reconstruction surgeon and microsurgeon, and President of PRMA Plastic Surgery in San Antonio, TX. Dr C is certified by the American Board of Plastic Surgery and is an active member of the American Society for Reconstructive Microsurgery (ASRM), and the American Society of Plastic Surgeons (ASPS) for which he has served on several breast reconstruction educational committees. He has authored and co-authored several book chapters and scientific articles in peer-reviewed journals on breast reconstruction-related topics, and is routinely an expert speaker at regional, national and international academic meetings. Dr C has dedicated his professional life to advocating for breast cancer patients, and strongly believes that shared decision-making between the physician and patient is crucial in achieving the best treatment outcomes. To this end, he founded Toliman Health, a digital health company committed to helping physicians, healthcare organizations, and industry improve patient experience and outcomes via empowering shared decision-making technology. Toliman's flagship product, the Breast Advocate® App, is the world's first shared decision-making app for breast cancer surgery and breast reconstruction. Breast Advocate® provides anyone with a breast cancer diagnosis, or at risk of developing breast cancer, a much-needed voice in their breast cancer surgery decision-making. Dr C also leads the Shared Decisions and Personalised Care Expert Group at the World Health Innovation Summit (WHIS). Connect with Dr C: Website: https://linktr.ee/drchrysopoulo Facebook: https://www.facebook.com/drchrysopoulo Twitter: https://twitter.com/drchrysopoulo LinkedIn: https://www.linkedin.com/in/drchrysopoulo
Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself. She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness! Business and collaboration offers can go through here: Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself. She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness! Business and collaboration offers can go through here. Annie-Danielle Grenier raises awareness and advocates for rare diseases, living with a few herself. She mostly does this as a writer, public speaker and through her blog turned website: Ma vie de zèbre (My Zebra Life). Annie-Danielle launched Ma vie de zèbre in 2013 because she had difficulty finding information in French on hypermobile Ehlers-Danlos syndrome, her only rare diagnosis at the time, and what little she could find wasn't relatable to her province of Québec (Canada). She wanted to changed that! Annie-Danielle is very active as a patient partner, involved in many management, education and research projects and doing things like shaping policies, educating future healthcare professionals, working in bioethics research, and much more. Annie-Danielle was a translator and editor (in French and in English) and before that worked many years in show business (on stage but also behind the scenes). She has a bachelor's degree in psychology, but also studied in Arts and literature and in event production. Annie-Danielle's atypical life experiences give her a different view on things, which she loves to share with people and, she hopes, can inspire. Her motto is that life's obstacles are not obstacles to happiness! Business and collaboration offers can go through here: https://www.adgrenier.com/en/
Samira is a healthcare strategy and design leader who has incubated and operated numerous healthcare startups. She is the founder and CEO of Manta Cares Inc., a global community of caregivers and survivors dedicated to transforming the cancer experience, a company that emerged from her experiences as a cancer survivor. Manta Cares designs and develops tools and resources that enable cancer survivors to regain control and peace of mind. As part of the Manta mission, she hosts the podcast Patient from Hell, which Spotify ranks within the top 10% of all globally shared podcasts. She is also a Venture Partner for Sozo Ventures, a global venture fund that invests in category-defining companies. Before holding those positions, she was VP of Product at Visby Medical, where she launched a multi-million dollar infectious disease test. Samira started her career at McKinsey & Company and has degrees from MIT (Biological Engineering), Stanford University (Design), and Wellesley College (Art History). In her spare time, she can be found practicing martial arts, sketching, writing poetry, and playing with her two rescue dogs.
Shruti Mitkus is the Director of Genetic Education and Navigation at Global Genes, a leading rare disease patient advocacy organization. Shruti is a human molecular genetics scientist and genetics educator. She earned her doctorate in Human Genetics from University of Maryland Baltimore and completed her post-doctoral training at the National Institute of Mental Health, researching the genetic mechanisms of neuropsychiatric conditions such as schizophrenia and bipolar disorder. After working in many different areas related to genetics, such as basic research, pharmacogenomics, genetic diagnostics, and variant interpretation, Shruti felt driven to engage more closely with patients and communities. She transitioned to patient advocacy and now directs programs that inform families about the molecular genetic causes of their illness, guide them through the diagnostic process and educate them about gene-based treatments, work that she describes as “genetic advocacy”. While Shruti loves the science of genetics, she is most passionate about translating her knowledge of genetics in an approachable manner and addressing barriers to access genetic testing and cutting-edge treatments. She is an ardent believer in the power of education to empower and ultimately improve the lives of patients and families. Shruti can be reached at https://www.linkedin.com/in/shruti-mitkus-rarediseasegenetics/
Estela was diagnosed with a progressive neuropathy called Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later. In 2002, she graduated from FIT with a Bachelor's in Interior Design. Today, her professional background in design, marketing, trend forecasting, and creative direction brings an unexpected approach to connecting the disability community to wellness, empowerment, and health. After volunteering for eight years, Estela joined the Hereditary Neuropathy Foundation full-time in 2018 as their Program Development Manager. Later in 2018, she testified in front of the FDA on the patient experience and the importance of funding CMT studies and potential therapies. As moderator for the CMT-Connect webinar series, Estela enjoys sharing resources and expert information with the CMT community on various valuable topics. On the EmBrace It Podcast, she interviews community thought leaders and aims to empower women living with disabilities in all facets of life. Estela and co-host Lainie Isbia also provide original inclusion workshops focusing on improving advocacy & DEI through communication tools, starting with “How to Communicate with Anyone About Disability.” They've worked with many top brands, such as Levi Strauss, Pinterest, Lockheed Martin, The Abilities Expos, SUNY Farmingdale College, Health Union, and more. In 2019, Estela gave her first TEDx talk titled “RePurpose Your Pain” on turning adversity into life's most beautiful work. She co-teaches inclusive and adaptive design at the Fashion Institute of Technology for their Design for Social Impact program. Estela is represented by Gamut Management, an all-inclusive talent agency.
Dr. Sarah Parker Ward wants to help you think more affectionately about death so you can experience a healthier, more fulfilling life. Sarah holds a Ph.D. in Emerging Media Studies from Boston University where her research explored death cognition and related policy implications. She continues this thanatological work today both in practice and study as the co-founder of We Are Clio, a digital platform launching in 2024 to empower individuals on their deathcare journey through personalized education and community-building with non-clinical care providers such as death doulas, green burial crafters, and legacy artisans. In addition to death doula training, Sarah has also undergone instruction in mindfulness and psychedelic peer support. You can find this mom of three on LinkedIn and on Instagram at @skparkerward.
Neilanjan Nandi, MD, FACP is an Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center at the University of Pennsylvania. Dr. Nandi's practice focuses on the management of Inflammatory Bowel Disease (IBD, eg, Crohn's disease, Ulcerative Colitis) and recurrent Clostridium difficile infection via Fecal Microbiota Transplantation (FMT). Dr. Nandi serves on the executive council of the Philadelphia Crohn's & Colitis Foundation (CCF), the medical advisory board of the United Ostomy Associates of America (UOAA), coordinates outreach on the American College of Gastroenterology Patient Care Committee and is a founding board member of the South Asian IBD Alliance (SAIA). He also regularly peer reviews research publications and serves on the social media editorial board for the premier journals 'Inflammatory Bowel Diseases' and 'Crohn's & Colitis 360.' His research has focused on studying conditions co-morbid to IBD quality of care such as characterizing the management and consequences of iron deficiency anemia and non-alcoholic fatty liver disease in IBD patients. He has a particular interest in the diagnosis and management of refractory Clostridioides difficile infection and the application of fecal microbiota transplantation in C difficile. Dr. Nandi has helped conduct a number of clinical trials of stool derived microbiome therapies. He has also authored numerous book chapters on the diagnosis and management of various viral, parasitic, mycobacterial and bacterial infections of the GI tract. Dr. Nandi's fervor for clinical education has been recognized with multiple teaching awards including the 2023 Sidney Cohen Faculty Teacher of the Year for the Gastroenterology & Hepatology division of the University of Pennsylvania. He was honored as the 2019 Physician Hero by the Philadelphia/Delaware Valley Crohn's and Colitis Foundation at their annual Take Steps for Crohn's & Colitis event and wields digital & social media platforms to amplify education, outreach & advocacy in IBD to clinicians and patients. He was also awarded the Philadelphia CCF's Chairman's Citation in 2022. He is the regular host of an academic podcast : ‘GI Insights: IBD Crosstalk' which features high yield, evidence based medicine discussions with guests from different interdisciplinary fields critical to providing comprehensive IBD care. Dr. Nandi's passions include fitness, cooking, virtual reality gaming, reading and dancing. Follow him on social @fitwitmd.
Erin Moore is a visionary leader and innovator focused on transforming healthcare and building a more equitable economy for health and care. As the founder of Meanwhile Health, Erin leverages her strengths in systems thinking, strategic management, and leadership to drive meaningful change. Erin is an exceptionally skilled communicator, serving as an advisor to executives and delivering compelling talks on innovation and healthcare reform. She is also a gifted writer, using her platform to raise awareness of critical issues and share a bold vision for a better future of healthcare. Her unique blend of leadership, strategic insight, and communication expertise allows her to motivate teams, advance complex initiatives, and achieve transformational results.
Dr. La Toya Luces-Sampson, affectionately known as Dr. Toya on social media, is a multi- faceted individual—a wife, mother, board-certified Obstetrician and Gynecologist, entrepreneur, speaker, and best-selling author. Born and raised in Trinidad and Tobago, she journeyed to the United States where she earned both her Bachelors and Medical Degrees from Howard University in an accelerated 6-year BS/MD program. Her medical training was further honed at Pennsylvania Hospital in Philadelphia. Her medical prowess is only one side of the coin. Dr. Toya is a thriving entrepreneur, being the brainchild behind "Buy Default," a curated directory aimed at promoting Black businesses and professionals. She's also the founder and CEO of Amina OBGYN Consultants, an independent contracting company providing hospital-based OBGYN services. Dr. Toya has broadened her medical practice by embracing telehealth, now offering her expertise to the women of California and Texas. Entrepreneurship became Dr. Toya's beacon out of professional burnout, igniting a passion for patient education. She leverages her social media platforms to embolden women, providing invaluable insights to help them take charge of their reproductive health and advocate for themselves. Her endeavors echo a central message of empowerment and education, making a meaningful impact on her followers and patients alike. Discover more about Dr. Toya's mission and connect with her: Dr. Toya's Website Telehealth Services: Amina OBGYN Consultants Follow her on TikTok, Instagram, Facebook and YouTube
Terri Coutee is the Founder and Director of DiepCFoundation. She started the nonprofit organization in 2016, two years after her own successful breast reconstruction, to provide support, education, and resources for those affected by breast cancer facing mastectomy. Terri hosts the DiepCJourney podcast and the DiepC Foundation educational channel where she interviews surgeons, patients, healthcare professionals, and individuals to provide resources and lived stories to listeners. She provides written content through her blog at DiepCJourney.com. Terri is a Project LEAD graduate, an intensive six-day science course designed to train patient advocates from the National Breast Cancer Coalition. She is co-lead on the World Health Innovation Summit shared decision-making expert group. Terri is a consumer patient advocate serving on the DoD-CDMRP for the breast cancer vaccine under the leadership of the team at the Cleveland Clinic. She has co-authored published papers and assisted surgeons and researchers gathering data for on-going studies in breast cancer and breast reconstruction to improve patient experience and outcomes. Terri believes education is the key component for patients being able to have a shared decision-making conversation with their health care team. Here educational resources and social media contact information can be found here: DiepCFoundation Educational Channel on YouTube DiepCJourney Podcast We are on Spotify, Libsyn, Apple Podcasts, and Amazon Music DiepCJourney.com Blog Social Media Channels: LinkedIn: Terri Coutee Facebook: diepCfoundation.org Instagram: diepcfoundation Pinterest: tgcoutee (DiepCFoundation.org) Twitter: @6state
Dr. Eugene Manley Jr is an inspirational speaker that often speaks about overcoming barriers, mentoring, and STEM and workforce diversity. He is a Mechanical Engineer, Biomedical Engineer, and Molecular and Cell Biologist with expertise in musculoskeletal biology, biomechanics, and cancer biology. He is adept at planning and executing complex systems biology problems, imaging, pathology, and combination drug therapies. Currently he is the Founder and CEO of the STEMM & Cancer Health Equity (SCHEQ) nonprofit foundation that seeks to increase STEMM workforce diversity and improve outcomes for underserved and marginalized populations across the cancer care continuum. He previously worked at LUNGevity where he oversaw STEMM outreach and engagement, launched a Minority Mentorship and Training Program, and ran 3 virtual health equity series. Prior to this, he has worked in fundraising and development, scientific grant administration, science writing/communication, and has been a curator of information. He serves on national and international boards regarding health equity, STEMM access and mentoring, and community engagement. His overarching philosophy is not what can he do for himself, but what can he do for those that do not have a voice. Website: https://scheq.org Linkedin: STEMM & Cancer Health Equity Facebook.com/STEMMCHEQ Instagram.com/STEMMCHEQ
Dr. Yun “Sherry” Wang is an Assistant Professor on the tenure track at Chapman University School of Pharmacy (CUSP). Her academic journey is built upon a foundation in Geospatial Science from Washington University in St. Louis, an exploration of Data Science at Monash University, and comprehensive Ph.D. training in Clinical Pharmacy. Since she arrived at Chapman in May 2021, she has established and led the "Patient Safety Lab," a research initiative driven by her profound interests in health service research and pharmacoepidemiology, with a special focus on substance users and chronic disease patients. The "Patient Safety Lab" is a collaborative effort that utilizes diverse real-world datasets to explore various projects, including "Opioid Prescribing and Overdose Deaths Before and During the COVID-19 Pandemic in California," "Utilization of Buprenorphine Treatments in California: A Real-World Assessment of X Waiver Holders and Prescribers," "Spatiotemporal Disparity Mapping of Buprenorphine Treatment," and "Treatment Adherence Disparities among Adolescents and Young Adults with Cancer." These multifaceted projects unite over ten dedicated faculty members and students, fostering collaboration beyond the boundaries of Chapman University. Dr. Wang's professional background encompasses a spectrum of disciplines, including machine learning, epidemiology, clinical pharmacy, health economics, and health service research across Asia, Australia, and the United States. Her contributions are evident through peer-reviewed publications in esteemed journals such as JAMA, Lancet, Clinical Infectious Disease, International Journal of Cardiology, Pharmacogenomics Journal, Drug and Alcohol Dependence, Pain Reports, and Neuroepidemiology. Her editorial role for the "Opioid Epidemic during the COVID-19 Pandemic" Special Issue of the journal Healthcare underscores her dedication to addressing the opioid crisis. Her research findings have garnered attention in ISPOR News Across Asia, Physician Weekly, and the COVID newsletter by the Washington State Department of Health. She received the American Association of Colleges of Pharmacy (AACP) New Investigator Award in 2022. Faculty profile: https://www.chapman.edu/our-faculty/sherry-yun-wang Google Scholar: https://scholar.google.com.au/citations?user=-RicqRIAAAAJ&hl=en
Dr David Beaumont is a Consultant Occupational Physician, a doctor specialising in the health of workers. He is a Past President of the Australasian Faculty of Occupational and Environmental Medicine. He provides consultancy services to some of New Zealand's major employers and also the provision of health and wellbeing programmes through his company Positive Medicine Limited. His book, Positive Medicine: Disrupting the Future of Medical Practice won the BMA (British Medical Association) Medical Book Award for Primary Care, 2022. David is passionate about helping people realise that to truly experience positive health in their lives they first have to change their own understanding of health. To truly have health it must be viewed as a positive concept, with the realisation that it is integral to every area of our lives. To move beyond being experts in disease, doctors need to be able to treat the whole person and empower people to take control and responsibility for their own lives and health. www.drdavidbeaumont.com www.positivemedicine.com
Our guest on this episode of the HD podcast isVanessa Joy Walker: Health Consumer Advocate, Survivorship Coach, and Founder of Living After Crisis Inc. Currently pursuing an MPH at UNC Gillings School of Global Public Health, Vanessa collaborates with esteemed organizations such as HMP Global's Psych Congress and Caelum Diagnostic Solutions. Her powerful perspectives on perseverance, patient engagement, social equity, and joy have been featured in prominent outlets like The Wall Street Journal, The Washington Post, The American Cancer Society, K-Love Radio, and Menopause Today. Dedicated to Diversity, Equity, and Inclusion, Vanessa partners with transformative educational firms like The 2043 Project and Point Made Learning, shaping her contributions through a compassionate lens. With over 12 years of experience in healthcare, impact storytelling, advocacy, and operations, Vanessa is devoted to challenging the status quo. She serves as a trusted ally in guiding diverse organizations—whether in healthcare, life sciences, or any organization that prioritizes mental health and well-being. As a published author, sought-after patient advisor, consultant, and coach, Vanessa infuses authenticity and captivating storytelling into every element of her work. From conference rooms to virtual platforms, she fosters empathetic connections through engaging presentations exploring communication's power to ignite change. Connect with Vanessa on LinkedIn @VanessaJoyWalker for invaluable insights and inspiration. For collaborations and inquiries, email vjw@vanessajoywalker.com, and join her in creating a world where health and well-being are human rights."
Nick Holekamp, MD, is the vice president and chief medical officer at Ranken Jordan Pediatric Bridge Hospital. He joined in 2000, and for nearly two decades, he's helped more than 2,000 children and their families transition from a traditional hospital to home after chronic illness or injuries. Under Dr. Holekamp's leadership, Ranken Jordan transitioned from a 26-bed pediatric nursing home into a 60-bed, advanced pediatric specialty hospital that is regionally recognized as a center of excellence for the care of children with medical complexities. In 2018, he oversaw a $35-million expansion that nearly doubled the hospital's capacity, and he continues to lead initiatives that ensure a collaborative, high-quality, patient-centered care environment. He is the chief advocate for carrying out the vision of the hospital's founder, Mary Ranken Jordan, which was to care for kids beyond the bedside. Dr. Holekamp gives kids their best chance for recovery through Care Beyond the Bedside, the hospital's care philosophy that melds traditional health care with playful therapies that allows for routine child development, effective rehabilitation, and social re-integration so kids and their families can prepare for successful outcomes at home. His work has helped mold Ranken Jordan into a facility that parents describe as a “seamless, yet critical transition” for their child and that is held in high esteem by medical professionals across the healthcare continuum. In 2017, Dr. Holekamp co-authored “The Effect of a Comprehensive Care Transition Model on Cost and Utilization for Medically Complex Children with Cerebral Palsy, a research paper published in the Journal of Pediatric Health Care. In October, 2018, Dr. Holekamp presented his findings at the annual meeting of the Pediatric Complex Care Association in a talk titled, “An Innovative Model of Transitional Care for Medically Complex Children.” Dr. Holekamp earned a degree in biology from Dartmouth College before graduating from Saint Louis University School of Medicine in 1987. He completed his residency in pediatric and adolescent medicine at Cardinal Glennon Children's Medical Center. Prior to joining Ranken Jordan, he was a pediatric hospitalist at St. John's Mercy Medical Center in St. Louis. Website: www.rankenjordan.org
Ibrahim Rashid is the Founder of the Strong Haulers, a digital health platform that leverages data to help those with Long COVID and other chronic illnesses manage their symptoms. He is also the author of Strong Hauler: Learning to Live with Long COVID, a memoir of lessons learned while navigating chronic illness at a young age. His commentary on long covid, impact investing, and politics has appeared in the New York Times, The Atlantic, Scientific American, Psychology Today, the Huffington Post, Wired, MIT Sloan Management Review, and Impact Alpha. In 2021, Impact Alpha named him one of their Ten Voices Who Moved the Conversation for his writing on disability justice and impact investing. He holds a master's degree in public policy from the University of Chicago. For more information, see https://www.ibrahimrashid.com/
Kathy O'Shea is a 46-year migraineur and 36 year professor of English, who has combined these significant parts of her life into this literary anthology centered around five themes related to migraine. She is the winner the Chancellor's Award for Excellence in Teaching and has two beloved golden retrievers who are official therapy dogs at Monroe Community College in Rochester, NY, where she teaches literature, composition, and humanities courses. She is a regular migraine blogger on psychologytoday.com. Kathy's anthology has been selected as a first-place winner in Health for Firebird, "Award Winning Finalist” in the Health: category of the 2021 Best Book Awards sponsored by American Book Fest, and has recently received the Book Excellence Award. Kathy has appeared on numerous health-related podcasts to discuss her book and journey with migraine and hopes to use the book to help educate migraine sufferers, their family and friends, medical professionals, and the general public about this debilitating disease. You can get her book ' So Much more than a Headache' here: https://www.kentstateuniversitypress.com/author/kathleen-oshea/
Tanisha Bowman, MSW, LSW, APHSW-C, NEDA Proficient, is a death doula living in Pittsburgh, PA who currently works as a full-time palliative care social worker in a small rural healthcare system. With the support of an amazing palliative care team, Tanisha has been able to explore ways to bring her passion for death care and openness about death and dying into a highly medicalized environment. Her wide range of expertise has piqued the interest of reporters, podcasters, and other medical systems and Tanisha has enjoyed the ability to share what she has learned on a variety of platforms. Tanisha Bowman, MSW, LSW, APHSW-C, CGP, NEDA Proficient Palliative Care Social Worker Death Doula
Christina Gagnon is a former micro preemie survivor, born in 1986. She's someone who's defeated the odds at times when medical technology was 50/50. It was the time of trial and error. She's now come to tell her heroic story to all.
Charles Gellman is the Chief Patient Advocate of HiDO Health. His expertise is in clinical informatics and data analysis which accelerates the understanding of health data to improve health outcomes. HiDO research is focused on reducing home medication errors, avoiding unnecessary hospitalizations and saving billions of healthcare dollars. Together health care can enhance transparency to all providers that enables better patient care and equal access to care for all people. HiDO Background Information https://us.hidohealth.com/about YouTube Channel https://www.youtube.com/channel/UCS-E9J74PeAT0ioieZOZBEQ
Soula Mantalvanos Artist, designer and gallerist. Advocate for the better quality of care, founder of My Health Story. Soula combines her years of living with chronic pain and her professional creative communication experience to advocate for a better quality of care. In addition to presenting at medical conferences, Soula has self-published a book, appeared in an award-winning documentary and established the website pudendalnerve.com.au. Soula offers her personal story on the website and found resources to help with the endurance and treatment of chronic pain. Soula's most outstanding achievement is founding My Health Story, an engaging, safe and innovative way for patients to generate and store their personal health experiences. My Health Story (founded as PainTrain – My Health Summary) initially concentrated on pain management. However, founder Soula Mantalvanos realised she could expand her novel health summarising idea to help people with other chronic health conditions such as Stroke, Dementia and aged care. pudendalnerve.com.au myhealthstory.com.au Design portfolio ooi.com.au Learn more about becoming a My Health Story Friend or My Health Story Affiliate here: https://myhealthstory.com.au/mhs-friends/
Dr. Molander is an emergency medicine physician with greater than 25 years in clinical care. She analyzes quality of care and is passionate about patient education. Dr. Molander became involved in the world of sepsis in 2007, initially training intensivists in Early Goal Directed Therapy. She served on her hospital Sepsis committee from 2009 to 2015. As chair from 2011 until 2015 she collaborated with fellow Sutter hospitals as they navigated through a new Electronic Health Record and a sepsis initiative serving the critical access hospital to the quaternary care center. She has served on the Sepsis Alliance board since 2018 and was recently their Chair of the Board of Directors. She co-authored a chapter on Sepsis for the American Medical Life Support textbook for Emergency Medical Services and has an updated edition coming out later this year. She is currently participating in a year long Digital Health Fellowship with the goal of optimizing communication amongst patients and providers.
I am a professor of Genetics and Oncology at Memorial University, Newfoundland and Labrador (Canada). My main interests are identifying social and medical outcomes of cancer patients and their predictors (including demographic and biological markers). In the last few years, I also become interested in patient-oriented research and public engagement. I lead the Public Interest Group on Cancer Research that consists of cancer-affected public members as well as cancer scientists. This group designs studies and public outreach activities, including public conferences. It is quite an active local cancer advocacy group as well. In addition, I am a member of Atlantic Cancer Consortium and have roles in organizations/committees with an aim of addressing the issues faced by cancer patients and family members. Help controlling cancer and its effects on the population is very important for me. By doing all of these – that is research, public outreach, advocacy, and committee service, I believe that I contribute to positive change, better studies, effective advocacy, and genuine public outreach that will eventually lead to better survival outcomes, experiences and conditions for cancer patients.