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.In this insightful conversation, we explore the evolving landscape of the Cystic Fibrosis (CF) community. We share personal updates and discuss key advancements in treatment, while also addressing ongoing challenges faced by patients and families. Topics include the emotional weight of age milestones for those with CF, collaborative organizational support, and critical legislative issues impacting the rare disease community. The episode also delves into the growing cancer risks in CF, the importance of regular screenings, and the difficulties patients face with insurance coverage. Emphasizing the vital role of the Cystic Fibrosis Research Institute (CFRI), they highlight its efforts in advocacy, education, and psychosocial care. The discussion calls for increased participation in clinical trials, better funding for rare disease research, and greater awareness of diversity and the implications of late CF diagnoses."The CF fight is far from over. From cancer risks to access to care, this conversation is everything." Siri Vaeth.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 Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks 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 Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks 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 Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en