Living With Cystic Fibrosis

"Oh, the people you'll meet, and the places you'll go..."That classic Dr. Seuss line couldn't have been more true when I found myself at a rare disease conference, taking with Dr. Gabriel Cohn. A quiet presence with a resume that reads like a roadmap through the last 30 years of rare disease breakthroughs, Dr. Cohn is the kind of person who reminds you just how much heart and science it takes to change lives.Dr. Gabe Cohn is the Executive Director and Medical Director of the Rosenau Family Research Foundation. He stepped into the role in October, bringing with him over three decades of experience that spans academic medicine and the biotechnology industry. A licensed, board-certified Clinical Geneticist and Obstetrician-Gynecologist, Dr. Cohn has contributed to the development of multiple therapeutics aimed at treating rare genetic disorders—a career built on both clinical precision and compassionate innovation.Beyond RFRF, he's also the Chief Medical Officer at iECURE, Inc., a biotech company pioneering gene editing therapies for rare diseases. His prior leadership roles at Homology Medicines, AVROBIO, OvaScience, and Shire reflect a steady focus on advancing gene therapy and editing platforms. Since 2017 alone, he's played a pivotal role in getting five different cell and gene therapy programs past the critical regulatory gatekeeping stages of IND and CTA submissions.Dr. Cohn isn't just a scientist—he's a builder, a connector, and a relentless advocate for the potential of genetic medicine to rewrite the future for patients with rare diseases.If you would like to get a hold of the Rosenau Foundation: https://rosenaufoundation.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

From Costco to Connection: Podcast Advice That Changed EverythingWhen I spotted a feature on podcasting in The Costco Connection, I was excited. When I saw Michelle Glogovac featured? I knew I had to reach out. That decision turned into one of the best moves I've made for growing my podcast.Michelle,  THE Podcast Matchmaker®, publicist, and author of How To Get On Podcasts, shared simple, powerful strategies that helped expand my reach. One standout? Getting featured on other podcasts. It boosted my visibility, brought in new listeners, and gave me fresh insights into how other hosts run their shows.In this episode, Michelle shares her approach to storytelling, visibility, and the importance of showing up. Her message: Your story is your superpower.If you want to grow your platform and connect with more listeners, don't miss this one.“Your story is your superpower. The more you share it, the more people you help—and the more you grow in the process.”— Michelle Glogovac,The Podcast Matchmaker®. Michelle is terrific and you will hear and relate to her infectious personality. You'll want to be her best friend!Find out more or connect with Michelle:Author: How To Get On Podcasts Podcast Host:  My Simplified LifeFounder and CEO: The MLG Collective  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Live from Mix and Mingle Education Day: A Powerful Conversation with CaregiversIn this deeply moving live episode recorded at the Mix and Mingle Education Day, we brought together a powerful group of caregivers—grandparents, parents, stepparents, dads, and friends—for a heartfelt discussion about the emotional journey of caring for a loved one with cystic fibrosis.What started as a simple idea to gather voices turned into our most beautiful and emotional podcast yet. There were tears, laughter, and unforgettable stories. We were honored to be joined by a Grief Counselor who helped guide us through the complex feelings that surfaced during our conversation.This episode is a raw, real, and uplifting tribute to the strength, vulnerability, and love that caregivers bring to their roles every single day.Join us for a conversation that honors the heart of caregiving and the power of community.You'll hear from:(00:00:00) Laura Bonnell - Host - (Egypt, Foundation programs, legislation)(00:16:49)  Lois Teicher - CF Grandmother (Laura's Mom) (00:19:05)  Natalie Wicks Lois's partner(00:21:36) Julie Weatherhead - Grief Doula(00:28:45)  Sharon Tischio - CF Mom(00:33:08) Cambria Whitaker - CF Mom in a queer/transgender relationship(00:38:55) Theresa Dagget, MSU Clinic, Respiratory Therapist, CF coordinator(00:49:00 ) Dorothy Stratford,CF Family Caregiver(00:52:15) Jillian Rogers Smith, 33 year old CF Patient and Dad, Bill Rogers (01:01:40) CF Mom to 6 year old daughter Louisa(01:07:28) Wendi Tague (Nurse Coordinator) and Claire Haglund (Social Worker) Present but not on the microphone were Joe Bonnell (Laura's husband), Jeannette Bovensie (Dorothy's Mom) and Dani Nettleton and daughter.Claire Haglund: CHaglund@dmc.orgWendi Tague: wtague@dmc.orgLois Teicher (Laura's Mom): Loisteicher@yahoo.comNatalie Wicks: Piccolo35@gmail.comTheresa Daggett: daggett3@msu.eduCambria Whittaker: cambriawhitta@gmail.comDorothy Straford: dstrat701@gmail.comSharon Tischio: stischio@comcast.netJamie Rudnycky: jamie.rudnycky@gmail.comJulie Weatherhead: weathervanecounseling@gmail.comJillian Smith, Jillian's Jay Walkers: jill@jilliansjaywalkers.org   And Jillian's Dad, Bill Rogers Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Cystic Fibrosis and obesity?  Until recently this has not been a topic of conversation for the CF community. The reason for obesity in the CF community is better health and longer lives, so the concern is now a reality.  University of Michigan CF doctor, Carey Lumeng is researching the issue.  As he says in this podcast, researchers have a lot to learn about the connection between better health in CF and obesity.  We also talk about The Bonnell Foundation fellowship program. A few years ago we started the program to encourage doctors to work in the specialty field of cystic fibrosis. Dr. Lumeng is one of the doctors who oversees this program.Dr. Lumeng is the Frederick G.L. Huetwell Professor for the Cure and Prevention of Birth Defects and Professor in Pediatrics and Molecular and Integrative Physiology. Dr. Lumeng is the Division Chief of Pediatric Pulmonology at the C.S. Mott Children's Hospital and Associate Director of the Michigan MSTP Program.He grew up in Indiana and graduated from Princeton University in Molecular Biology. He received his PhD in Human Genetics and MD from the University of Michigan and completed residency training in Pediatrics in the Boston Combined Pediatrics Residency Program at Boston Children's Hospital and Boston Medical Center. He then completed fellowship training in Pediatric Pulmonology at the University of Michigan and started as faculty in 2006.  He runs a research lab focused on the health effects of obesity and the links between metabolism and lung health. The laboratory participates in both basic science and translational research projects in adult and pediatric obesity. He is funded by the NIH and the CF Foundation for new projects studying the changing causes of diabetes in people with CF.To contact the CF pediatric department (the Bonnell girls are pictured on this page): https://www.mottchildren.org/conditions-treatments/cystic-fibrosis-pediatric?pk_vid=6ff46bd2d38fe04c1739891353f5b28b Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

A 70-year-old person with cystic fibrosis. It's a phrase that wasn't just uncommon a few decades ago—it was virtually unheard of.When Luanne McKinnon was diagnosed in 1969 at just 13 years old, doctors told her parents she might live to be 19 years old. Today, Luanne stands on the edge of her 70th birthday—a milestone that not only redefines possibility but embodies resilience, creativity, and purpose.Born in Dallas, Texas in 1955, Luanne was diagnosed at a time when cystic fibrosis was still barely understood. No vests. No targeted medications. No community. And yet, she carved out a life of profound impact. “I stand as a witness to the possible.” says Luanne McKinnonAfter earning a Master of Fine Art in Painting and a PhD in Art History, she launched a celebrated career in the visual arts—owning an art dealership in New York City, directing major university museums, publishing works, and curating over 35 exhibitions. She even became a Fellow at the prestigious Getty Research Institute.And while that would be more than enough for most of us, Luanne continued to pour herself into advocacy—serving as Co-chair for Stanford's Patient and Family Advisory Committee, raising awareness for CF patients before and after transplant. In 2011, she underwent a successful double-lung transplant at Stanford, and fourteen years later, she is still very much living proof.This episode is not about her equally remarkable husband—EMMY award-winning filmmaker Daniel Reeve—though we'll mention him later. This is about Luanne—her life, her art, her truth, and her refusal to let a diagnosis define the limits of her possibility. She says, “I stand as a witness to the possible.”And after listening to this conversation, I think you'll believe in the possible, too.Welcome, to a very special episode of the Living with cystic fibrosis podcast and our incredible guest, Luanne McKinnon. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Eight miles. Two friends. One cause.In this inspiring episode, Jacob Venditti opens up about his life with cystic fibrosis, offering candid updates on his health and the challenges he faces as he prepares for a lung transplant. He emphasizes the vital role of community support and shares how his work with the Live Fearlessly Foundation fuels his mission to empower others. Jacob also sheds light on the rare disease income threshold amendment he's championing, which aims to create more equitable opportunities for patients. The conversation builds toward his upcoming Crossing 4 CF event, showcasing his unwavering resilience and commitment to living fearlessly.The heartfelt conversation continues with Rob Brown. Rob talks about their upcoming 80-mile paddle race aimed at raising awareness for cystic fibrosis (CF). Jacob shares how open ocean paddling has become both a personal passion and a powerful way to connect with the CF community. Rob reflects on his enduring friendship with Jacob and their mutual love for surfing. Together, they highlight the healing power of the ocean—physically, mentally, and emotionally—especially for those living with CF. To connect with Jacob and his team: https://livefearlesslyfoundation.com   Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole DunnWhen our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn't fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, and everything has changed.In this episode, Laura talks with Nicole Dunn, Senior Market Development and Education Manager at Tactile Medicaland an expert on the AffloVest. With a strong background as a registered respiratory therapist and a deep passion for respiratory education, Nicole is at the forefront of innovation in airway clearance therapy.Together, they dive into the evolution of the AffloVest—from its design improvements to the company's mission to provide accessible, life-changing therapy for people with chronic respiratory diseases like cystic fibrosis. Nicole shares how patient feedback has shaped product development, the impact of CF modulators on airway clearance, and how community engagement plays a vital role in Tactile Medical's approach.This episode is full of inspiration, real-life success stories, and a look at how far we've come in improving comfort, mobility, and quality of life for people with CF.To learn more about Tactile Medical please visit:  https://tactilemedical.comTo learn more about AffloVest:  https://affloVest.comFor questions: afflovestinfo@tactilemedical.com Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

CFRI's Executive Director, Siri Vaeth is sunshine to me. She's a dear friend.We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor.  Siri is truly among the smartest people I know.  She is an advocate for her daughter Tess, who has CF,  and is an incredible advocate for the CF community.  If you need legislation explained to you, Siri can help you. She can put it in a way you'd understand.Siri has a master's degree in social Welfare, she's fluent in Spanish, she's great at marketing and does a lot of public speaking…and is an all-around great person.This episode is packed with information about legislation, colon cancer, health insurance and discussion about the fact that people of color are under-diagnosed, concerns for the future of CF and catching up about our kids.To learn more about CFRI: https://www.cfri.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

I love that I was able to bump into Aaron Trumm via an email.  He reached out to check in about our scholarship program for college.  We only award grants to undergrad students, but I was intrigued by all I learned about him.Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he's going to law school in the Fall.We have a lot to talk about!  To get in touch with Aaron:https://aarontrumm.comA music production education brand:https://recordinglikemacgyver.com This site Aaron says is disappearing soon! https://nquit.com  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy and innovation in healthcare. The conversation highlights the emotional highs and lows experienced by families dealing with chronic illness and the importance of maintaining a positive outlook.Bob aligns real estate strategies with scientific business objectives. Which is very cool if you ask me. He's on numerous boards and is extremely involved in work, life and organizations.___________________________Bob Coughlin is a Managing Director at JLL and is the New England's Life Science and Healthcare Practice Group lead. He specializes in the representation of lab, GMP manufacturing and technology space. Robert delivers creative solutions that align real estate strategies with scientific business objectives. ExperienceRobert most recently operated as the President & CEO of the Massachusetts Biotechnology Council, where his mission was to advance Massachusetts's leadership in the life sciences to grow the industry. Robert has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick's administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Robert has also held senior executive positions in the environmental services, capital management and venture capital industries.Board InvolvementFranciscan Children's Hospital, Vice Chair, Board of TrusteesTeam Impact,  Member of National Board of DirectorsMassBio, Member, Board of DirectorsBA Sciences, Member, Board of DirectorsAnagram, Member, Board of DirectorsNuvara, Member, Board of DirectorsCystic Fibrosis Foundation, Chair, MA/RI Board of DirectorsSchwartz Center for Compassionate Care, Lifetime Board Member Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Michael Armstrong is a 25-year-old pre-law student. He loves to read, paint, play card games and video games. He was diagnosed with CF as an infant. We're going to talk about his CF journey and how life took a turn when he was being evaluated for a lung transplant in 2023 and 2024.   Michael was featured in the 2025 Portraits of cystic fibrosis calendar and our first or second  calendar he was featured when he was about five with his  brother.  Michaels dad, Tom was on our Board of Directors for many years…and I was lucky to see him just the other day.Thanks for sharing your story Michael. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

If you lose a child to CF, what does that do to parents? To their identity? And their place in the CF community.  These are hard discussions to have, but for a couple years now Peggy Hawkins has want to share her story on this podcast.Peggy talks about the toll waiting for a transplant takes on a family.  One of the issues was that one of them always had to work, in this case it was her husband, so she stayed with Stephen. Peggy and her husband are the parents of three men. She lives in South Carolina  now but was born and raised in Detroit. Peggy worked as a nurse for 43 years (not in CF).Their oldest son Chris is 37 and their youngest is 31 years old. Stephen who died from complications of CF was the middle child. He died at 29 years old. To get in touch with Peggy you can email her here: stephen65roses@aol.com Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community.  She has cystic fibrosis and lives in Colorado.  She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda's health was declining. Then Trikafta, a CF modulator drug was approved by the FDA. This groundbreaking drug gave Amanda her life back and kept her from needing a lung transplantation. Amanda lost many friends over the years to CF and she carries a profound sense of gratitude for every additional day she lives.   Amanda co-founded CF United, a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Every member is either a patient or caregiver. Prior to CF United, Amanda served on the advocacy board Dell Children's Medical Center in Austin Texas and volunteered with the CF Foundation.When Trikafta faced affordability challenges through the Prescription Drug Affordability Board (PDAB) in Colorado, CF United emerged as strong advocates, successfully influencing decisions to maintain accessibility. CF United's advocacy goes beyond preserving access; they champion "The Independent Patient Voice." Amanda is committed to ensuring that all patients have access to the treatments they need, and that they get a seat at the table regarding decisions that affect their lives. In addition to advocacy, Amanda finds solace in her Colorado ranch with her husband son, two dogs and two horses. Amanda copes with her disease with laughter and realism.  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

I have known Becky Penuel for many years. Becky used to run Miles for cystic fibrosis and then merged her nonprofit with Brian Callanan's nonprofit, CF Life Fitness. After the merger, the nonprofit name is now: BreatheStrong. Becky is the Executive Director and was not able to join us today but, her Director of Operations is with us .Shawna Gray is the director of Operations and Programs, and we are happy to have her. She is also the director of the Big Peach Sizzler 10K/5K Race Director.  This is BreatheStrong CF's annual Big Peach Sizzler 10K & 5K. She has been working to support the CF community since 2022 when she joined the Miles for Cystic Fibrosis team as the Development Director. Shawna's nonprofit engagement began in college through volunteerism and logically progressed into her professional career. Outside of work, Shawna enjoys being present for her family (husband, 2 stepchildren, and rescue dog).To find out more visit the BreatheStrong CF web site: https://breathestrongcf.org  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better.  They have an excellent newsletter too. Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each other for about 20 years, which seems impossible. Time does fly as they say.  Heather's husband Scott has CF.  Scott helped build  The Bonnell Foundation from the beginning as he was one of the Board of Directors.Heather brings more than 25 years' experience working throughout the public-private, philanthropic and nonprofit sector.  She's held executive-level positions as both Chief Administrative Officer and Executive Director and is well versed in economic and community development, education, government, social impact, and health and human services organizations. Heather oversees and supports the core branch teams with all aspects of client engagement and service delivery.If you have a nonprofit, or want to learn more about running a nonprofit, this could be the place for you.  They have classes and resources, along with a free newsletter that anyone can access. It's also full of local jobs if you're searching for a nonprofit job.NPS is a women-owned and women-led LLC founded with one goal in mind to assist small to mid-sized nonprofits with fund development, governance,operations and management services. With more than 80 years of combined service our core team is based in metro-Detroit and has spent their professional and personal lives in service to the community. Since 2013, we have amassed a client roster of more than 100+ organizations ranging from small and emerging organizations with budgets under $100,000 to large regional and national nonprofits with budgets ranging upwards of $30 million. The average client we serve has an annual budget of between one and $5 million.NPS: https://nonprofitspot.com  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world. From scientists, to pharma, to other nonprofit execs like me. I was thrilled to meet Jenifer Waldrop. She joined the Black Women's Health Imperative as the Executive Director of the Rare Disease Diversity Coalition (RDDC) in October 2022. The organization address challenges faced by rare disease patients of color.  They bring together rare disease experts, health and diversity experts.Their Vision: a world without health disparities in rare disease patients' communities.Mission: to address the extraordinary challenges face by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH). Jenifer volunteers as the Professional Development Director of the National Association of Asian American Professionals (NAAAP) of Colorado.Find more here: Rarediseasediversity.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Melissa Yeager, Executive Director and Co-Founder of Claire's Place FoundationSince the planning stages of Claire's Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation's namesake) and Ellie.  With many years' experience in project management and event planning, she has the drive and the experience needed to get the foundation off the ground as well as the personal history of raising a child with cystic fibrosis.  Melissa is also a strong supporter of many charities and fundraising activities in her community, mostly related to causes that support families and children living with this and other rare diseases.Founding Claire's Place Foundation has been a way for Melissa to give back and share her experience with other families living with cystic fibrosis.  “We have always been blessed with a supportive family and a wonderful group of friends.  It is my hope that we can provide the same type of support to families walking this path alone.  It definitely takes a village or in this case a foundation to raise a child with a chronic, life threatening disease like cystic fibrosis”To learn more about Claire's Place Foundation visit: https://clairesplacefoundation.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Emily Schaller, 42, is a heroine with one goal in mind, to Rock CF.A lot of laughs on this podcast with my friend Emily!  She talks about her health, the Foundation, new and old legislation and what's coming up in 2025!Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life for everyone with CF. Emily created and manages an internationally acclaimed line of merchandise to help fulfill the mission of Rock CF. Today, Emily's battle against this deadly genetic disease is printed in Runner's World, FORBES, The Atlantic and SPIN magazines, the New York Times, The Washington Post, USA Today, NPR and posted on Competitor.com, Shape.com, the Associated Press, and various cystic fibrosis focused educational websites. She is a marathon running, super teacher and a speaker, addressing parents, patients and audiences about the effects of cystic fibrosis and the ever changing and improving treatments being made. Through Emily's humor and personal experience, she inspires the masses to transform their lives with exercise, diet and goal setting.To get in touch with Rock CF: https://letsrockcf.org/rock-cf-half Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks "Only 29 percent of the people who should be helped by 340B, are helped."If, like me, you have not heard about Charity Care or Dollar For, I am glad you're here!  This podcast will tell you about both Charity Care and the nonprofit, Dollar For.  I learned about the program during a webinar by Patients Rising.You'll learn more about your rights regarding healthcare, and about the help that's out there.If you're overwhelmed with medical bills, confused by insurance, your rights and about getting help, this podcast will be a wonderful education. Eli Rushbanks is an attorney who works at the intersection of medical debt and consumer protection. He currently is the General Counsel and Director of Policy & Advocacy at Dollar For, a patient advocacy non-profit that helps patients apply for hospital financial assistance. In that capacity he works with patients, advocacy groups, lawyers, state and federal regulators, and hospital leaders to improve patient access to and experience with financial assistance. He helped build Dollar For from the ground up which, so far, has helped relieve over $60 million in debt for nearly 20,000 patients. His work has been featured in publications such as the New York Times, Wall Street Journal, and NPR. His reports on charity care policy have been cited by the CFPB and have been the basis for class action lawsuits for charity care violations. Eli says, "Fourteen percent of people who applied to a hospital for Charity Care, never heard back from the hospital.  There is not uniformity on how these programs are run." Terry Wilcox is the Chief Mission Officer with Patients Rising. Terry says that 340B sounds like a tax form, not something that patients know about. It's not just to help patients, it's to help hospitals too. But there has been some misuse of the program, “Expanded from 4 billion between 2000 and 2009, then the A.C.A codified the fact that they could expand, it ballooned to 66 billion dollars. And hospitals now have beautiful wings in their hospitals.”The 340B Drug Pricing program was implemented by Congress in 1992 and it allows hospitals to purchase drugs at significant discounts to serve vulnerable populations. The program was originally added so that hospitals could treat underserved communities and help them stretch their resources.To learn more about Dollar For: https://dollarfor.orgTo learn more about Patients Rising: https://www.patientsrising.org/event/midday-masterclass-340b-in-focus-history-impacts-and-state-level-realities/  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Are titles important? As a rare disease parent, we think you're worthy of a Ph.D.  Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done.As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old.  Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is thanks to her efforts.Laura Bonnell and Beth Vanstone have been advocating a total of more than 50 years combined, and they're not done yet. They need your help, on any scale that works for you (small or large).   Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

What is a Private Patient Advocate? Do you need one?Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey.  She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life.  She focuses on people diagnosed with cancer and rare disorders. Dr. Borrelli  has worked in healthcare for over 25 years. Apart from her experiences in professional practice, she has encountered frustration and discrepancies while personally navigating the healthcare system. She has been the provider, the patient, the daughter, the sister, and the parent facing the overwhelming healthcare system; and left feeling alone and confused. Her passion is to help patients navigate the chaotic healthcare system. No one should have to do it alone. Getting a second opinion is often a good idea or enrolling in a clinical trial. Dr. Borelli research best management options for undiagnosed or chronic disease patients, as well related insurance/billing issues. Which we can all relate to!Dr. Borelli can also assist if you're admitted to a hospital or rehab facility, and she communicates with the healthcare team and helps reduce medical errors. How to get a hold of Dr. Borelli: advocate@pathwaypa.comTo hear her podcasts: https://pathwaypa.com/podcast/  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019.His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate all the ways Dylan continues to inspire our CF Community.  Our last question is: will he do another one? What do you think he might say? Also, I bet we might see some of his well-known glittery artwork featuring some running in the future. We can only hope! Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand.  They both work for the Partnership to Improve Patient Care, or PIPC (a coalition).Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director.  Sara, an attorney, joined PIPC in 2011 and serves at the firm, Thom Run Partners.  Sara focuses policies to advance a patient centered health system, from patient engagement in research to driving outcomes that matter to patients in healthcare payment and delivery.  Sara is a healthcare and welfare policy expert with over 25 years of experience, beginning her career on Capitol Hill working for former Senator John Breaux (D-LA) from 1996-2003, and later as an attorney at the law firm Patton Boggs.  Thayer joined PIPC in 2019. Thayer works with PIPC's diverse membership of patients, healthcare providers, researchers, and other groups to ensure that patient centricity is at the core of the nation's health care system.  Thayer has expertise in health care value assessments and their implications on patients and people with disabilities and continues to engage in this topic both at the Federal and State level. Chair of PIPC: (From their website) Tony Coelho is a former United States congressman from California, and primary author and sponsor of the Americans with Disabilities Act. Tony was elected to Congress in 1978 and served for six terms until 1989. He served on the Agriculture, Interior, Veterans Affairs, and Administration Committees during his tenure, specializing in disabled rights. In 1986, Tony was elected House Majority Whip. As the chief vote counter for his party, Tony oversaw a series of Democratic victories in the House on measures ranging from the budget to cutting off funds for the war in Central America. Tony was the original author of the Americans with Disabilities Act, signed into law by President George H.W. Bush. By 1994, the U.S. Census Bureau reported that some 800,000 more people with severe disabilities had found employment than were employed when the bill was first enacted. Tony currently serves as the DNC Disability Council Chair, seeking to ensure that the political process is accessible to people with disabilities. President Bill Clinton appointed Tony to serve as Chairman of the President's Committee on Employment of People with Disabilities, a position he held from 1994 to 2001. He also served as Vice Chair of the National Task Force on Employment of Adults with Disabilities. In 1998, Clinton appointed Tony as the United States Commissioner General at the 1998 World Expo in Portugal. Clinton also appointed Tony as Co-Chair to the U.S. Census Monitoring Board, a position he held until his appointment as general chairman of the Gore presidential campaign.Sara and PIPC work with nonprofit organizations, like The Bonnell Foundation to help us to understand and keep track of all the legislation on the books, and coming down the pipeline. To contact PIPC go to: https://www.pipcpatients.orgTo find PIPC on social media check them out at: @PIPCpatients (on twitter and LinkedIn)Another resource Sara and Thayer suggest: https://www.patientaccessproject.orgAcronym's used during this podcast: Prescription Drug Affordability Board (PDAB)Rare Disease Advisory Council (RDAC)National Association for State Health Policy (NASHP)Institute for Economic and Clinical Review (ICER)Equal Value of Life Year Gained (EVLYG)HR 485 Protecting Healthcare for all Patients Act   Read it here: https://www.congress.gov/bill/118th-congress/house-bill/485 Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently.  Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance.  Heather has so much CF Mom wisdom. I am glad to call her a friend. In 2019 Heather became a member of the family advisory board at C.S.Motts Children's Hospital in Ann Arbor, and is a Parent Family Partner through the CFLN with the CF clinic at Motts for just over a year.Heather is also a mentor in The Bonnell Foundation's Hand in Hand mentoring program.  Heather and her husband Christopher recently spoke at The Bonnell Foundation Night of Hope Gala.  We were lucky to have them!Heather on FB: https://www.facebook.com/share/xkiJ9yoitqvTUEsV/?mibextid=LQQJ4dHeather on IG:  https://www.instagram.com/heather61811/profilecard/?igsh=MWxwOTR5d3N0dHh1OQ==  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

We're in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she's hosting this podcast with Laura Bonnell.Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American's thinking that medically everything is better in Canada, but that's not true. Many countries around the globe are struggling with the high cost of drugs for Rare Diseases, Canada is no exception. However, while we see industrialized countries around world looking at solutions to get rare therapies to patients quickly in an effort to maintain, improve and save lives, Canada remains stuck relying on a drug system designed to handle aspirin. Canada is the only country in the G7 without a national approach to rare diseases.In February 2023 the Federal government announced a Rare Disease Drug Strategy with a 1.4 billion budget over three yrs to support it. The expectation was that drugs for rare diseases would have a quicker pathway and that it would address the specific challenges of the rare community and fill some of the many gaps to access. Sadly, that has not been the case thus far. Beth says, “There are a lot of challenges for patients, it's very timely, there are a lot of gaps that will potentially harm patients.”  Touraj is one of the patients falling through the gaps.Touraj says his FEV1 is 35 percent, which means he is potentially looking at a double lung transplant. “It is shocking that in the next two to three years I might be getting to the point of needing a transplant. We're sad about it. My girlfriend is sadder about it than I am right now. I think of it as more of a reality.”  The hope would be access to a drug, despite his rare mutation, but the ability to try it.To connect with TourajInstagram: https://www.instagram.com/tojyla/Facebook: https://www.facebook.com/touraj.dehghan/Linkedin:  https://www.linkedin.com/in/touraj-manshadi Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

I always tell this group of undergrad students that they are our future, and that makes the future look bright. Atef Choudhury and Naim Mashni are incredible people and students. They're both Seniors at Lyman Briggs College -- majoring in Human Biology. They're minor is in business and they're on the pre- med track. Atef and Naim are the co-founders and Co-Presidents of Cure Found MSU . Atef's connection to CF is his nephew. He was born with the disease in 2017. Watching his nephew grow up with CF, seeing him do treatments, it inspired him to become a doctor. His passion for making a difference in the CF world Brought him to creating, with Naim, Cure Found MSU.  The Bonnell Foundation is very lucky because Cure Found MSU continues to raise funds for our non profit.You're going to meet Bhumika Kale too. She's the University of Michigan, where she is a sophomore pursuing a major in Public Health while following the pre-medical track. As the Co-President of the University's chapter of Cure Found, a club dedicated to raising awareness and support for Cystic Fibrosis patients.Her journey into the medical field began in high school, where she actively participated in various pre-med clubs and volunteered in healthcare settings. This hands-on experience, along with a year of working as a medical assistant, solidified her desire to pursue a career in medicine. To get a hold of either of these organizations reach out here: https://curefoundmsu.orgAtef Choudhury, Cure Found MSU: atefc@msu.eduNaim Mashni, Cure Found MSU: mashnin1@msu.eduBhumika Kale, Cure Found UM: curefound@umich.edu  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

From news reporting,  to CF and beyond.  Laura talks about her journey. The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off,  and now look at it!  We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Education Scholarships. Our programs have also grown, with more on the way.  We're so glad you're a part of it".To reach Laura: thebonnellfoundation.orgOr follow us on social media (see below) Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988.Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her Grandmother, her legal guardian raised Sorcha and was her rock. Then, after her grandmother died, she struggled. Sorcha started using drugs to numb herself from the struggles of her physical and mental illnesses. This went on for about two years.Then she focused on getting healthy. Today, she relies on movement, nutrition, and self-care to stay present and optimize her quality of life. She's passionate about raising awareness about addiction and holistic treatment of health of wellness among the chronic illness community. She is also a certified health and wellness coach. Sorcha works with an organization called, Face it Together. A nonprofit that helps others impacted by addiction to get well. To find out more about what Sorcha does, check out this website: https://www.wefaceittogether.org/Sorcha's Instagram @sorchamtnmaryBusiness FB: https://www.facebook.com/wefaceittogether Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children's Organ Transplant Association (COTA). Rick Lofgren has been the non profits president for more than two decades. Rick helps raise millions each year to support families with the cost for transplantation. In addition to all he does, Rick is married with kids of his own.I learned about Rick, from my brother.  My nephews Colton and Caden had a rare disease called Chronic Granulomatous Disease (CGD). CGD is passed down through the mother, only to sons, not daughters. CGD causes frequent and life-threatening infections because their immune system can't fight off certain harmful bacteria and fungi. My nephew's mother is the carrier. Women do are only carriers of the genetic disease, only boys have the genetic diesase. The great news: there is a cure. Both my nephews were cured. About my brother and nephew. Noah works for Abbott Laboratories as a district manager across several states and has three kids, and a stepson wife his wife Lisa. My nephew Colton is a Patient Care Coordinator at a specialty Pharmacy in Detroit. Colton is an advocate for his disease and the rare community.This is a reminder that it's good to share information because after my brother told me about COTA, I connected with Rick at COTA.  The Bonnell Foundation and COTA are now partners helping people who need funds for transplants, and all that it entails.Colton will be post transplant for three years on September 3rd, 2021Caden will be post transplant on December 16th, 2022To connect with Colton: coltonteicher@yahoo.comTo connect with Noah: noahteicher@yahoo.comFor information about COTA:  https://cota.org/get-started/   Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Diane Shader Smith's daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter's diary, "Salt in My Soul".  This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons.Diane Shader Smith  is now releasing a second book on behalf of her daughter, "Diary of a dying Girl".  The title honestly may sound depressing, but as Diane explains, it is a wakeup call about our public health crisis and is an empowering story. Mallory's writing is so beautiful. And I can tell you, you won't be sad reading her book, you'll be inspired. In this podcast Diane explains that it's our job to raise awareness about Phage Therapy, and about the dangers of antimicrobial resistance (AMR). Something that everyone should become educated about, whether CF is your disease space, or not.You can buy Mallory's book here:  https://diaryofadyinggirl.com    All the money goes to AMR research through Mallory's Legacy Fund. You can also sign up, and tell your story at the Global AMR Diary: https://www.globalamrdiary.org Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Children's Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It's not a Medicaid program. Access to the program has nothing to do with your household income.  The program has a lot of benefits. CSHCS covers transportation that can include airfare and/or lodging for conferences relate3d to your child's condition. Children Special Health Care Services has been around for almost 100 years.Danielle Pitchford, with CSHCS is explains the program to us in great detail. Pitchford is the Outreach and Engagement Analyst and oversees promoting CSHCS services and resources while engaging with providers. She also works with other professionals who work with the target population, as well as families of children with special health care needs.  To be transparent, Laura sits on the Michigan BioTrust for Health Community Values Advisory Board, which is part of MI DHHS. She also sits on a Family to Family volunteer group.  And, her daughters benefited from CSHCS until they moved out of state.CSHCS website: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/general-information-for-families-about-cshcsTo learn more about CSHCS, take the free https://courses.mihealth.org/PUBLIC/home.html entitled "What is Children's Special Health Care Services." At this same site you will find another course entitled "CSHCS-Support Parent Training Course."Call CSHCS Family Phone Line at  1-800-359-3722. Send an email to: cshcsfc@michigan.gov Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Shortly after we did this podcast Matt died from complications of cystic fibrosis.  With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about concern for his health.  Thanks to Jenn, his family and to Matt for all he gave to the world and especially the CF community. You are missed and will never be forgotten.From his sisters Molly McBryan and Ame Austin:"After an extremely long hard fought battle with cystic fibrosis, Matt McCloskey succumbed to this terrible disease on February 7th, 2024. He was a beloved husband, son, brother, uncle, and friend to many.   He will be remembered for a lot of things; one of which was his passion for the Take A Breather foundation in which he started.The concept of Take A Breather started for Matt in 2012, when his own health battle with CF really took a turn. Knowing first hand what it is like to live with this disease, it was his dream and vision to offer families living with cystic fibrosis, a temporary escape, a breather, from the everyday struggles and emotional burdens of their disease. Matt put his heart and soul into this Foundation and is truly what drove him despite his own health issues.  Because of Matt, thousands of lives have been forever impacted due to his selflessness of wanting to bring joy to so many living with CF. He worked tirelessly and countless hours for the Take A Breather Foundation and the CF community.  Throughout the years, we heard from  many recipients/families the huge impact Matt's mission had on their lives but we know there were countless others whom we did not hear from because he also worked quietly behind the scenes to motivate, answer questions, or just listen. There are no words to express the profound impact this loss will have on all those who knew and loved him and to the CF community."This was written prior to his passing:Matt and Jen have a great story to tell. Two people with CF, living their separate lives, and then they began working together to make a difference in the lives of people with CF.Matt McCloskey was born in 1968 and grew up in Philadelphia, he has several other siblings, and one he never met because he died from CF at 2 months old.In 2015 Matt received a lung transplant. Matt's in his 50's now, but his life expectancy was 6 years old.He is currently running the Take A Breather Foundation.Jen Bleecher, who is 52 years old, is the Community Outreach Volunteer for Take a Breather.  Jen is married, and has a 27-year-old daughter . Jen worked as a nurse for over 20 years. Jen had a double lung transplant, she has pivoted to volunteering some of her time helping with the Community Outreach initiatives, such as building relationships within the CF and broader communities, assisting in planning of fundraising events, and overseeing Take A Breather's School Club program. To contact Matt and Jen: https://takeabreatherfromcf.orgPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comViatris: https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

As people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause.  I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. There is so little discussion and education about women and menopause in general. I recently listened to a podcast by Mel Robbins about menopause, and then saw menopause activist Ellen Dolgen on CBS News Sunday Morning, and reached out to her.Dolgen is a best-selling author, speaker and Creator of Fearless Vagina - A Crash Course in Mastering Menopause. Her frankness in this podcast is delightful. It's All About Empowerment: My motto is: "Suffering in silence is OUT! Reaching out is IN!" Let's shatter the stigma surrounding menopause and support one another.She offers an online course for women in all stages of menopause which I highly recommend and have signed up for.To sign up for her programs, and read all about her: EllenDolgen.com IG: https://www.instagram.com/menopause_mondays/FB: https://www.facebook.com/MenopauseMondaysLinkedin: https://www.linkedin.com/in/ellendolgen/?original_referer=https%3A%2F%2Fellendolgen.com%2FTik Tok: https://www.tiktok.com/@menopausemondays?X: https://twitter.com/EllenDolgen Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Dr. Caleb Bupp. In my opinion. A scientific star.  He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius.  You will love this podcast.  We talk about rare disease, his family and how he discovered and helped families who had no rare disease answers, until they met him! An absolute scientific rock star.  I met Dr. Bupp at a MichiBio event that introduced legislators, advocates and doctors to one another.  One of the best events I have attended and now I can follow Dr. Bupp and watch him change the medical world.Here are his stats: Caleb Bupp, MD, FACMG – Division Chief, Medical Genetics and Genomics.  Dr. Caleb Bupp is a pediatric trained, board-certified medical geneticist with Corewell Health Helen DeVos Children's Hospital in Grand Rapids, Michigan. He serves as the Division Chief of Medical Genetics and Genomics.  He is also an assistant professor at Michigan State University.  He co-discovered a treatable genetic syndrome caused by ODC1 mutations now termed Bachmann-Bupp syndrome and is the clinical director of the International Center for Polyamine Disorders.  This was recently recognized by the New York Intellectual Property Law Association as their ‘Inventor of the Year' for his patent related to this condition.  He helped create and run Project Baby Deer, a statewide initiative to provide access to rapid whole genome sequencing which resulted in Michigan Medicaid being the first to create an approval and carve-out payment policy. Dr. Bupp helped form the Rare Disease Network which provides support and education throughout Michigan. Dr. Bupp received his Bachelor of Science in molecular biology from Grove City College in Grove City, Pennsylvania and his medical degree from the University of Toledo College of Medicine in Ohio.  He completed pediatrics residency at the University of Louisville in Kentucky and his medical genetics training at the Greenwood Genetic Center in South Carolina.Cheers to science and innovation.  Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Cambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar  struggles.  Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada.  These two women connected, as you'll hear, because their sons share the same mutation.Rowland received  access to a CF modulator after a battle with her insurance company.  Her son's mutation is not on the FDA approved list for Trikafta…. even though there is proof that Trikafta will work on her son's mutation.To follow Cambrey go to @cfadvocacyYou can email her: cambreywhite@gmail.com Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Did you know most states have programs for CF families, and they don't have to do with your income? Michigan has one of the best programs in the Country. It's called Children's Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about it.Brandi Berry, LLMSW is the Program Coordinator of the Kent County Children's Special Health Care Services Program, Fetal Infant Mortality Review and the Healing Through Grieving: Pregnancy, Infant, Child Loss Program, all of the Kent County Health Department.   Brandi has over 20 years' experience in the field of Child Welfare and Human Services.  She is also a Full Spectrum Doula and as well as an Adjunct Professor with the Grand Valley State University School of Social Work.  Brandi is the mother of three children, the oldest of which has rare disease, EOE.  She enjoys reading, traveling, and spending time with her children.         To find out more about Children's Special Health Care Services program: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/the-family-center-for-children-and-youth-with-special-health-care-needs-family-center Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

A new CF modulator could be on the horizon. Professor Dr. Bhanu Jena is exciting to tell us all about it. Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in Bhubaneswar, Odisha, India,  He got his masters in zoology. He received the Peasant Ku. Memorial Prize and the Utkal University Gold Medal. He also got his doctorate in zoology (Molecular Endocrinology). His resume is lengthy and impressive. He was a fellow at Yale Univeristy of Medicine and worked as on the faculty there. He also worked in the Department of Physiology at Wayne State Univeristy. Dr. Jena was conferred the title of Distinguished Professor, and the George E. Palade University Professorship by the Board of Governors at Wayne State.Dr. Jena is a cell biologist and chemist. He unraveled understanding of cell secretion with his pioneering discovery of the 'porosome', the secretory machinery in cells. This short bio doesn't even touch the surface of his contributions. To read more about him: https://static.s123-cdn-static- d.com/uploads/5744411/secure/normal_6539c9b2a5bef.pdfHIs company website: https://www.porosome.comA great porosome video, and a short one, explaining: https://www.youtube.com/watch?v=5y0Hset6gNw Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Approximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease.  Current modulator drugs help more common CF mutations.  Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that will help her. Her Foundation, Emily's Entourage, is a leader in research. They are focusing on people with CF who have the nonsense mutation.On Emily's team is Dr. Chandra Ghose, who is the Chief Scientific Officer. Dr. Ghose founded Bioharmony Therapeutics, an early stage biotech startup that specialized in the development of novel antimicrobials, to combat drug resistant bacterial infections.Chandra spent 8 years at the Aaron Diamond AIDS Research Center where she focused her research on developing life saving vaccines in the laboratory of Dr. David Ho.  Chandra earned her PhD from New York University School of Medicine in microbiology and her bachelors degree from Saint Louis University in biology and theology, splitting her time between the U.S. and Spain campuses.For more information about Emily's Entourage: https://www.emilysentourage.orgFor registry information: https://www.emilysentourage.org/cystic-fibrosis-patient-registry/For Emily's Entourage information: https://www.emilysentourage.org/eeupdates/ Follow EE at: @emilysentourage  Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Living legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You'll hear the connection Laura and Mitch have, and they didn't know it until this podcast! Dr. Drumm is a living CF hero.Dr. Drumm earned his doctoral degree while in a lab with Dr. Francis Collins, the former director of the NIH and at that time, in 1989 the pair co-discovered the gene that causes CF.The discovery of the gene that causes CF was one of the biggest contributions to science, and even though science didn't move as fast as we wanted in 1989 when this gene was discovered, it still moved pretty fast….look where we are today with a modulator drug that corrects the underlying condition of CF, and more possibilities in the pipeline.Dr. Mitch Drumm is one of those scientific hero's. He is currently a Professor in the Department of Genetics and Genome sciences, vice chair of translational research, director of the Research Institute for Children's healh and is at the CF Clinic at Case Western Reserve University.Because of the successes in cystic fibrosis, Dr. Drumm brought together faculty from across the Case Western Reserve University campus in 2015 to form The Research Institute for Children's Health.  This institute was launched to implement laboratory-to-clinic research programs for other rare, genetic disorders, patterned after the CF approach.  Dr. Drumm currently serves as the Institute's director, using it as infrastructure for rare disease research, but also as a platform for community outreach. His current research in CF focuses on gene editing approaches to therapy and he has active programs to understand altered metabolism in CF, problems of CF intestines, and how genes that modify CF disease severity convey their effects. Dr. Drumm also coordinates the Ohio Valley CF Consortium every year.  Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Do you know what is needed before you have a lung transplant?  Or even how it works?  More and more adult CF clinics are explaining the details to adult patients, but if you're a CF parent, there is a lot you may not know. We welcome Dr. Ryan Hadley. Dr. Hadley is at Corewell health in Grand Rapids. He is an assistant Profession of Medicine in pulmonary and Critical care. He is a published author and researcher some of his academic appointments include Core Faculty with Pulmonary Critical Care Fellowship and MSU, assistant professor in the pulmonary and critical care.His resume is beautifully long.  Here are some of his publications: “Acellular Normal and Fibrotic Human Lung Matrices as a Culture System for In Vitro Investigation” American Journal of Respiratory and Critical Care Medicine, Nov 1 2012, 186(9) 866-876.Adam J. Booth, Ryan Hadley, Ashley M. Cornett, Alyssa A. Dreffs, Stephanie A.Matthes, Jessica L. Tsui, Kevin Weiss, Jeffery C. Horowitz, Vincent F. Fiore, Thomas H. Barker, Bethany B. Moore, Fernando J. Martinez, Laura E. Niklason, and Eric S. White“Idiopathic Non-specific Interstitial Pneumonia” Respirology.  2016 Feb;21(2):259-68.Elizabeth Belloli, Rosemary Beckford, Ryan Hadley, Kevin Flaherty“Critically Ill Patients with Interstitial Lung Disease” Clinics in Chest Medicine.  2015Sep;36(3):497-510.Ryan Hadley, Robert Hyzy Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Everyone always asks me "What does it take to run a Foundation?"  So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation.Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is all about!Please follow us on social media!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

He's been arrested. He's CIS gender with a wife and kids. Rabbi Mike Moskowitz is also an orthodox Jew'is and he is one of the biggest supporters of the queer community. Rabbi Moskowitz is the Scholar-in-Residence for Trans and Queer Jewish Studies at Congregation Beit Simchat Torah, the world's largest LGBT synagogue. He is a deeply traditional and radically progressive advocate for trans rights and a vocal ally for LGBTQ inclusivity. Rabbi Moskowitz received three Ultra-Orthodox ordinations while learning in the Mir in Jerusalem and BMG in Lakewood, NJ. He is a Wexner Field Fellow, Senior Rabbinic Fellow at the Hartman Institute, and the author of Textual Activism, Graceful Masculinity, and Seasonal Resistance. His newest book, Covenantal Allyship, will be available this year. Rabbi Moskowitz's writings can be found at www.rabbimikemoskowitz.comWe met in person at Temple shir Shalom in West Bloomfield. Rabbi Moskowitz was speaking at the synagogue and wishing to always be an ally for the Queer community, I went.The CF community, every community has a queer population and that's why I felt it was important to talk about this.To reach Rabbi Mike Moskowitz www.cbst.orgTo learn more about him and to order his books https://www.rabbimikemoskowitz.com Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

We're going to Brazil for this podcast. Brazil is famous for some soccer players; you remember Pele and others. It's the largest country in South America, it has 4 times zones…60 percent of the amazon rainforest is in Brazil, their flag has 27 stars on it and they speak Portuguese there. And the food looks amazing there.I have never been to Brazil, but Gabriel Johnson was born and raised there!  Gabriel is the Projects and Institutional Relations Coordinator at Unidos pela Vida - Brazilian Institute of Cystic Fibrosis Care, has worked for nonprofits for the last 8 years. He graduated in journalism and marketing.Gabriel has MBAs in Digital Marketing and Project Management and is currently a master's student in Communication Sciences at the University of Porto, Portugal. Gabriel is a patient advocate for people with cystic fibrosis and rare diseases in Brazil. He's been doing this for the past two years….and he's only 31 years old!To learn more about CF in Brazil visit the Unidos pela Vida website (Vernonica Stasiak's Organization and where Gabriel works). www.unidospelavida.org.brThank you to Beth Vanstone for producing this podcast. Beth is a CF advocate in Canada. Her daughter Madi has CF. She can be reached at: beth@thebonnellfoundation.org Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

So many people with cystic fibrosis have gut pain. It is often times, debilitating. Dr. Matthew DiMagno and Dr. Jorge Machicado are working to find answers to the suffering of people with CF, and others without.Dr. Machicado is a Clinical Assistant Professor in the Division of Gastroenterology and Hepatology at the University of Michigan. Dr. Machicado earned his medical degree from Universidad Peruana Cayetano Heredia in Lima, Peru, and received a Master of Public Health at Johns Hopkins Bloomberg School of Public Health. Dr. Machicado's research focuses on epidemiology and clinical trials in pancreatic disorders. He has authored over 70 peer-reviewed articles, most of them on pancreatitis and pancreatic cysts. He has been recently selected as a FORWARD scholar by the American Gastroenterological Association, which aims to support physician scientists and future leaders in GI from under-represented populations. The Bonnell Foundation gave Dr. Machicado and his team a five thousand dollar grant to help study gut pain in people with CF. It's a long pilot program, similar to a clinical trial. This is a feasibility study.To get a hold of Dr. Machicado for this study: machicad@med.umich.edu Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Maureen Electa Monte and I go ... way back! When she was an engineer, and doing photography, she photographed our first Portraits of cystic fibrosis black and white calendar in 2003. The wives of the Detroit Tigers, pretty much all of them pregnant, played in our first celebrity softball game. They played against law enforcement at a ballpark in Sterling Heights. Years ago when she was working at IBM she was the Engineer of the Year, she was a multi-sport athlete and MVP of her basketball team.Since then, Maureen has grown her personal brand and is an author.  Her first book, Destination Unstoppable is fabulous.  It teaches the reader how to be a successful team player.  As Maureen knows, as I have told her for years, if she could get in a room with the Detroit Lions, they would get to the Super Bowl, and win. Her next book Win like a Girl,  is where she talks about the framework needed to help coaches and parents develop powerful girls who overcome adversity and expand their comfort zone.  The book itself, and the message or powerful and empowering to everyone.It relates to the CF world too.  As parents, and persons with CF, we must always advocate for ourselves, and the ones we love.   Meet Maureen Monte: https://maureenmonte.com/five-fears/Coaching example, one on one: https://www.youtube.com/watch?v=hCu4-It9JFMFollow Maureen on social media: https://twitter.com/maureenemonteFacebook: https://www.facebook.com/profile.php?id=100004767524903Linkedin: https://www.linkedin.com/in/maureenmonte/  Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Aliyah Novelli was diagnosed with cystic fibrosis as an infant.  Today, she's a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA.   Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her with a CF Impact grant to get it started. Aliyah launched her mindfulness program this year. It's for a program for adults 18 to 35 years old on CF modulators.Aliyah earned her master's degree in social work at the University of Pennsylvania. She also got a bachelor's degree in Fine Arts in dance at Temple University.Aliyah lives with her husband Mark and Mr. Boots (her polydactyl cat). They also have a Cavapoo dog named, Sammy. Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Canadian, Vicky Maldonado is the mother of a young boy living with a rare genetic form of CF. Sebastian is 6 years old, and a twin. The road to diagnosis was challenging. Sebastian was diagnosed with two rare CF genes after repeated respiratory infections and two hospitalizations. “We were told that Sebastian likely didn't have CF because he's “not White”— his parents are Canadian-born Latinos from Ecuador. Though CF affects all races and ethnicities, there's still a common misconception among health-care providers that it is a predominantly White disease.”Vicky and her husband were devastated to learn that their son would not have access to the life-changing and life-saving drug Trikafta because he has two rare mutations. Due to small populations in rare mutations, clinical trials are often not feasible. Other countries are using in vitro data to provide access to those with rare and ultra-rare mutations while approximately 200 Canadians with CF are being left behind.This is not a new problem in Canada, the pathway to access to new and innovative therapies is fraught with challenges. A broader regulatory approach is needed to support implementation of the National Strategy for Drugs for Rare Diseases, and cystic fibrosis is an example of this need. There are hundreds of disease-causing mutations, some with only a handful of patients worldwide. Health Canada can improve access to rare disease medications like Trikafta by using patient and laboratory in vitro data and by developing a regulatory model that permits bulk approvals of gene mutations that can respond to precision medicines like Trikafta. Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

A better future for health for: All of Us!Dr. Josh Denny is the All of Us Research program, CEO. A program that comes from the National Institute of Health.  The Bonnell Foundation is all about Science and Innovation! And he has a CF connect via his father!The goal of All of Us is to enroll 1 million people to build one of the most diverse health databases in history. This would allow resources to accelerate precision medicine for all populations.  This is critical to the future of our planet and population in my opinion…. but it's clearly why they called the program: All of Us. To succeed, and to properly represent our population…science needs All of Us.Josh is an amazing human, and I am honored to feature him in this podcast. Dr. Denny has been involved since the program's inception. He was a member of the NIH Precision Medicine Initiative Working Group of the Advisory Committee to the Director, which developed the program's initial scientific blueprint. He then led the program's initial prototyping project and the All of Us Data and Research Center. Josh was named CEO of All of Us in January 2020. Before joining NIH, Dr. Denny was a practicing physician and held several leadership positions at Vanderbilt University Medical Center. At Vanderbilt, he led discovery and implementation projects in precision medicine, including clinical pharma-co-genomics and Vanderbilt's DNA biobank. Dr. Denny was a pioneer in the use of electronic health records for genomics studies, including the initial descriptions of phenome‐wide association studies and phenotype risk scores.To get involved with All of Us, visit this website:  https://www.joinallofus.org/As I state in the podcast, I joined All Of Us, given over my genetic material and answers to medical questions. Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

(Please follow us wherever you get your podcasts, rate us and/or comment. Thank you)Part of the Bonnell mission, while doing these podcasts, is to raise awareness and shine the light on other Foundations who are also doing great things.  Today we're going to tell you about the CF Trust in the United Kingdom.Belinda Cupid is the Senior Impact Adviser at Cystic Fibrosis Trust. For the past six years she has been a member of the research team at Cystic Fibrosis Trust, their work is making a big difference to people with CF and their loved onesBelinda works with colleagues to explain research grants, to bring to life progress made and put cystic fibrosis research news in context. Belinda does a lot. She collects, analyses, and interprets information on the impact of CF Trust-funded research. Her hard work helps Cystic Fibrosis Trust evaluate the outcomes of their funding and helps generate income to continue to fund cystic fibrosis research into the future. Belinda completed her PhD in biological chemistry, she has spent the last 20 years working in medical research charities, supporting, and communicating research into motor neuron disease and cystic fibrosis.She's doing some pretty amazing work as you'll hear.Contact Cystic Fibrosis Trust U.K. https://www.cysticfibrosis.org.ukPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comViatris: https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

This is our third podcast with Alan Klein, the Chief Development Officer Healthwell. As a reminder Healthwell was paying about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors they stopped helping existing patients and couldn't help new applicatns with their CF bills. Healthwell closed their CF Treatment Fund to new and re-enrolling patients in 2023 with no word or idea when they would start up again. There was a lot of fear when this happened in August 0f 2023. The CF Vitamin and Supplement Fund did remain open, but there was also concern it may shut down.  With 40 to 45 percent of the CF population being helped by Healthwell, this was scary for many. The Bonnell Foundataion was refering people to Healthwell if we couldn't meet patients' financial requests.  So it was concerning for non profits like mine and many others who worried we could be overwhelmed with financial requests because Healthwell no longer had funding.The reason for this podcast is because, is that the program has opened up.  But not everyone knows it's back open to people with CF.To find out more about Healthwel Foundationl: https://www.healthwellfoundation.org Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

(Please consider subscribing to our podcast and rating it. It helps us with promotion. Thank you)What a treat for all of us today.  Nicholas Kelly is in the house. I've wanted him on our podcast for a while.  Nick was diagnosed with CF when he was 3 months old.Nick has so many accomplishments.  He earned a bachelor's and master's degree from Bowling Green State University. Nick is a dietitian. But that is not all, he is an author, dancer, and a speaker. Once you start watching his videos you won't be able to stop. Trust is something you must start from within, to trust externally. First trust yourself.Nicholas has done Ted X talks…Healing through the Human Experience. He also does motivational videos where he talks about fearing the truth.Everything Nicholas talks about is not CF, it's about life.  Did CF play a part in his internal strength, lets find out….The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at:  thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex:  https://www.vrtx.comGenentech:  https://www.gene.comViatris:  https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en