“I always say that singing and performing was as much a part of my DNA as cystic fibrosis.” Julia Rae

From the moment Julia Rae could speak, she was singing, and from the moment she could dream, she was already imagining a bigger stage. As her mother fondly recalls, at just two years old, Julia was watching Barney on TV and asked, “How do I get in there and do that with him?” That instinct, that pull toward performance, was never just about the spotlight. For Julia Rae, the stage became her sanctuary, and later, her platform for purpose.

Diagnosed with cystic fibrosis at birth, Julia’s life has never followed an easy script. But instead of letting a chronic illness limit her, she embraced the full range of her voice, as a singer, actress, writer, and advocate. She didn’t just want to perform; she wanted to make a difference.

At 16, Julia founded Singing at the Top of My Lungs, a nonprofit inspired by her own hospital experiences. Initially, the organization supported both CF research and creative therapies at children’s hospitals. But as larger institutions took a stronger lead in research, Julia saw a growing gap elsewhere.

“I’ve decided to devote all of Singing at the Top of My Lungs to music and creative art therapies... They are significantly underfunded, not covered by insurance, and they are often, honestly, the unsung heroes of children’s hospitals.”

Julia’s foundation now champions music and art therapies — the very programs that once transformed her own stays in sterile hospital rooms into spaces of joy and creativity. She knows firsthand that healing isn’t just about medicine — it’s also about expression, play, and being seen as more than your diagnosis.

Her own career blossomed when a YouTube performance caught the attention of a Beverly Hills record producer, leading to her single “Be That Girl” being featured in the film The Greening of Whitney Brown. She’s since performed the national anthem at major sports arenas, starred in national commercials, and most recently, in the 2024 film Playing Through. Her appearance on ABC’s Listen to Your Heart introduced her to a national audience, but she never let fame outshine her mission.

In parallel with her artistic pursuits, Julia has become a tireless advocate. She co-created and hosted Making It Matterwith the Boomer Esiason Foundation, currently leads Uncommon Lungs with Vertex Pharmaceuticals, and recently launched a podcast called A Deeper Look, spotlighting bold, thoughtful conversations with inspiring women.

Julia Rae is more than a performer, she’s a force. Her life is a testament to what happens when passion meets purpose, and when a voice refuses to be silenced by circumstance.

For the chronic illness community, and for anyone who’s ever been told “you can’t” — Julia’s story sings a different tune.

She’s not just making music. She’s making it matter.

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Never Just Surviving: Sophie Holmes on Running 36 Marathons with Cystic Fibrosis

Despite a schedule packed with training, advocacy, and breaking world records, Sophie Holmes of the U.K. always makes time to share her story, and we’re so grateful she did.

Diagnosed with cystic fibrosis at just four months old, Sophie was told she might not live past her teens. But rather than letting that define her, she’s spent her life rewriting the narrative. Her latest, jaw-dropping accomplishment? Running 36 marathons in 36 days. That’s right—36 consecutive days, 26.2 miles each day, driven by pure determination and an unshakable belief in what’s possible.

Sophie is not only an elite athlete and personal trainer, she’s a powerful advocate for chronic illness awareness. In this episode of the Living with Cystic Fibrosis podcast, she talks about what fueled her through each grueling mile, how she manages the intense physical demands of endurance sports while living with CF.

“Mindset is everything.” – Sophie Holmes

It’s easy to say that exercise is one of the best things someone with CF can do. But Sophie reminds us: that doesn’t mean it’s easy. Her story is a powerful example of grit, strength, and living fully—even when the odds are stacked against you.

Diagnosed with cystic fibrosis at four months old

Told she might not live past her teenage years

Ran 36 marathons in 36 days, demonstrating her extraordinary endurance

Set a Lake Cuomo Ultra Ironman World Record

Believes mindset is the key to overcoming life’s toughest challenges

Works as a personal trainer and chronic illness advocate

Redefines resilience—not just surviving, but thriving

Inspires runners, athletes, and anyone living with chronic illness

Lives with relentless drive and purpose

Shows us what’s possible when you push beyond the limits others set for you

You can find Sophie Holmes on IG: https://www.instagram.com/sophiegraceholmes/

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“It’s an honor to be an advocate,” says Laura Bonnell, founder of The Bonnell Foundation. “We are the government—people are. If we don’t fight for fair laws that help the people they’re meant to serve, who will?”

In this episode, Laura is joined by five passionate advocates—some seasoned, some new—who recently traveled to Washington, DC, to meet with lawmakers. Together, they share their personal experiences, insights on advocacy, and why storytelling and persistence matter in influencing policy.

The conversation highlights:

How to build relationships with legislative staff

The role of personal stories in driving change

The importance of staying organized and adaptable

Advice for those who can’t travel but still want to advocate

The emotional and rewarding aspects of standing up for what matters

Plus, we're joined by a lineup of experts working at the intersection of science, innovation, and policy:

Dr. Andy Kocab, VP of Research at ONL Therapeutics, shares how biotech is advancing treatments for retinal diseases. Contact: [email protected]

Harold Chase, Director of Government Affairs at NSF, discusses his journey from Senate staffer to global health policy leader. Contact: [email protected]

Thomas T. Moga, a veteran patent attorney and Fulbright Scholar, explains how intellectual property law impacts innovation. Contact: [email protected]

Dr. Brandon McNaughton, CEO of Akadeum Life Sciences, offers insight on entrepreneurship, biotech breakthroughs, and customer-focused design. Contact: [email protected]

Stephen Rapundalo, President of Michbio, reflects on bridging science, business, and public service. Contact: [email protected]

This episode is a powerful reminder that advocacy takes many forms—and every voice matters.

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: [email protected] 

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Vertex: https://www.vrtx.com

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We have a powerful conversation about dedication, innovation, and impact in the cystic fibrosis community in this podcast. I’m joined by two incredible guests from MVW Nutritionals: Mike Walters and Jason Vandiver.

Mike Walters is a true pioneer in pharmaceutical business and innovation, with nearly four decades of experience. He began his career at Johnson & Johnson, where he spent 14 years in leadership roles across sales, marketing, and management development. In 1996, Mike launched his first company to help organizations navigate product commercialization in the U.S. Since then, his work in the CF space has been nothing short of groundbreaking. He founded and led Source CF, MVW Nutritionals, and CF Global Services, playing a key role in bringing many standard-of-care treatments to market. A Vanderbilt graduate with degrees in Biochemistry and Chemistry, Mike brings both scientific insight and a deep commitment to rare disease care.

Joining him is Jason Vandiver, Chief Operating Officer of MVW Nutritionals. A proud Alabama native, Jason earned his degree in Finance from the University of Alabama at Birmingham and spent 16 years in banking before joining MVW during a time of rapid growth. He now helps lead the multimillion-dollar, family-owned company that’s become a global leader in nutritional products for patients with CF and non-CF EPI.

In this episode, Mike and Jason share their personal stories, the importance of strong partnerships, and the real challenges patients and families are facing—especially as funding landscapes continue to shift. We explore the power of empathy, the strength of community support, and why transparency in nonprofit operations matters now more than ever.

It’s a conversation about hope, action, and what’s ahead as we work together to support those who need us most.

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: [email protected] 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Substack is where I discovered Dr. MeiLan Han! I was browsing through and was pleasantly surprised to read an article, and learn that she wrote a book called, Breathing Lessons. And to top it off, she’s from my home state of Michigan. I also learned the Dr. Han’s book was “a passion project during the pandemic.”

I’m delighted to share a conversation with Dr. MeiLan Han, one of the country’s most respected voices in lung health and a tireless advocate for people living with chronic respiratory conditions.

Dr. Han is a Professor of Medicine and Chief of Pulmonary and Critical Care at University of Michigan Health. She’s not only cared for patients at the bedside but has devoted her career to understanding lung disease at its roots, with a special focus on chronic obstructive pulmonary disease (COPD), a condition that remains widely under-recognized and underfunded. Through her research, Dr. Han is helping to uncover how diseases like COPD affect the lungs in different ways, with the goal of making treatment more precise, more effective, and more personalized.

Her journey began at the University of Washington and continued through specialized training at the University of Michigan, where she also earned a Master’s degree in Biostatistics and Clinical Study Design. Today, she leads research funded by the National Institutes of Health (NIH), serves on national advisory boards for the COPD Foundation and the American Lung Association, and contributes to global guidelines that shape how lung disease is diagnosed and treated.

Dr. Han also serves as Deputy Editor of the American Journal of Respiratory and Critical Care Medicine, helping to guide the direction of clinical practice and research in pulmonary medicine.

If you or someone you love is living with a chronic lung condition, Dr. Han’s insight is not only encouraging, it’s essential. I’m so grateful to bring her voice to this platform. How many breathes do we take in a lifetime? It’s fascinating to discuss and you’ll hear the answer in our podcast.

Lung health, do you think about it?

To get her book: https://www.amazon.com/Breathing-Lessons-Doctors-Guide-Health-ebook/dp/B08X2ZFGNZ/ref=tmm_kin_swatch_0

Please like, subscribe, and comment on our podcasts!

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: [email protected] 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

"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.org

Email us at: [email protected] 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

From Costco to Connection: Podcast Advice That Changed Everything

When 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 Life

Founder 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.org

Email us at: [email protected] 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  https://www.viatris.com/en

Live from Mix and Mingle Education Day: A Powerful Conversation with Caregivers

In 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: [email protected]

Wendi Tague: [email protected]

Lois Teicher (Laura's Mom): [email protected]

Natalie Wicks: [email protected]

Theresa Daggett: [email protected]

Cambria Whittaker: [email protected]

Dorothy Straford: [email protected]

Sharon Tischio: [email protected]

Jamie Rudnycky: [email protected]

Julie Weatherhead: [email protected]

Jillian Smith, Jillian's Jay Walkers: [email protected]   

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.org

Email us at: [email protected] 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  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.org

Email us at: [email protected] 

Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris:  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 McKinnon

After 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.

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Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: [email protected] 

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Thanks to our sponsors:

Vertex: https://www.vrtx.com

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