I met Lea Goldberger, the CEO of the Cystic Fibrosis Association of Israel at a conference in Lisbon, Portugal. The European CF Society Conference.

She was not always in nonprofit leadership; she spent many years working in Israel’s high-tech and product world. She later moved into healthcare and social-welfare organizations, earned a master’s degree in nonprofit and community organization management from Hebrew University, and ultimately became the CEO of Israel’s Cystic Fibrosis Foundation.

Her perspective is valuable because she has experienced technology, healthcare, advocacy and patient support. And as someone who leads a national CF organization, she has a unique view of what it takes to improve the lives of people with CF, not only through medical advances, but through policy, education, access and community.

The CF community in Israel is diverse. There are approximately 600 to 700 people living with CF in Israel and more than 30% are part of Israel’s Arab community. Lea is a strong advocate for greater awareness, genetic testing, early diagnosis and newborn screening, particularly because earlier diagnosis can be so important now that highly effective CF treatments are available.

At the conference I know she was upset because one of the people she knows in the CF community was very ill. This is not just a job for any of us, everyone is family.

I am glad you get to meet my friend Lea.

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Rare disease connects more people than many of us realize. While every diagnosis is unique, the journey often includes many of the same challenges: searching for answers, navigating the healthcare system, advocating for better care, managing complex treatments, and finding hope along the way. Cystic fibrosis is considered a rare disease because it affects fewer than 200,000 people in the United States, just like mitochondrial disease. Although these conditions are different, the experiences of patients and families often have much in common.

Our guest is Michael Goldberg, a rare disease patient, advocate, entrepreneur, and author. Michael and I connected on LinkedIn, and I’m so glad he reached out because his story is one that will resonate with anyone whose life has been touched by a rare disease.

Michael lives with a rare mitochondrial disease and has turned his personal experiences into a mission to help others. He’s the Founder and CEO of 12 Brand | MediXo, a patient-led health technology initiative focused on medication adherence, dosing accuracy, and preventive health. He also helps fund research and community programs. Right by his side is his wife Judi. We talk with her about the challenges about being a caregiver, and how that can change a marriage. They’re beautiful marriage and upbeat, positive attitude will inspire you.

Michael is also the author of I’ll Have Mine Rare and I’ll Have Mine Rare: Growing Up Different. In this episode, we talk about advocacy, caregiving, resilience, and why the rare disease community is stronger when we learn from one another. Whether your family is affected by cystic fibrosis or another rare disease, I think you’ll find inspiration and encouragement in Michael’s journey.

To get in touch with Michael Goldberg: info@medixo.health

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I Was Wide Awake for Dr. Kimberly Canter’s Presentation on Sleep and Cystic Fibrosis
I was wide awake during a presentation about sleep, but that’s exactly what happens when you hear Dr. Kimberly Canter speak about the connection between sleep and cystic fibrosis.

As the mom of two daughters with CF, I know firsthand how elusive a good night’s sleep can be. For years, our nights included coughing, breathing treatments, medications, hospital stays, and the constant worry that comes with raising children with a chronic illness. Sleep wasn’t simply about feeling rested it was about survival, healing, and making it through another day.

That’s why Dr. Canter’s presentation resonated with me, and it will with you.

Dr. Kimberly Canter is a pediatric psychologist, Senior Research Scientist at Nemours Children’s Health, and Associate Professor of Pediatrics at Thomas Jefferson University. Her work focuses on improving the emotional and physical well-being of children and families living with chronic illnesses, including cystic fibrosis.

One of the biggest takeaways? Sleep isn’t a luxury, it’s a critical part of CF care.

Sleep Affects Every Part of Life
As Dr. Canter explained, sleep influences nearly every aspect of our health.

“Sleep impacts every single part of our life, of our health, at the physical level, at the mental level.”

For people living with CF, sleep is often interrupted by persistent coughing, airway clearance treatments, sinus issues, medications, hospital routines, and the overall burden of managing a complex disease. Even when someone finally gets into bed, staying asleep can be difficult.

Poor sleep doesn’t just leave someone feeling tired the next day. Research shows it can affect lung health, weaken the immune system, increase the risk of infections, and contribute to anxiety and depression.

New Treatments, New Questions
One topic I found especially interesting was Dr. Canter’s discussion about CFTR modulators.

These remarkable medications have transformed the lives of many people with CF, but researchers are also learning that some patients experience new or worsening sleep problems after starting these therapies. It’s another reminder that while treatments continue to improve, there is still much to learn about the day-to-day experiences of people living with cystic fibrosis.

It’s More Than Physical
Dr. Canter also spoke about something that doesn’t receive enough attention: medical trauma.

Repeated hospitalizations, frightening procedures, and years of living with uncertainty can leave lasting emotional effects. For some patients, those experiences contribute to PTSD-like symptoms, anxiety, and ongoing sleep disturbances.

It’s a powerful reminder that caring for someone with CF means caring for both their physical and emotional health.

Start the Conversation
Perhaps the most practical advice Dr. Canter shared was also the simplest.

“The most important initial step is to talk with your care team and make them aware that there is a problem.”

Too often, families accept poor sleep as “just part of CF.” But it doesn’t have to be ignored. Whether it’s adjusting treatment schedules, exploring behavioral strategies, addressing anxiety, or making accommodations at school during particularly difficult periods, there may be solutions that can help.

Why This Matters
Living with cystic fibrosis has changed dramatically over the past decade. People are living longer and healthier lives than ever before, thanks to extraordinary scientific advances. But quality of life matters just as much as longevity.

Sleep is one of those everyday challenges that often flies under the radar, yet it influences physical health, mental health, relationships, school, work, and overall well-being.

As a CF mom, I left Dr. Canter’s presentation with a deeper appreciation for something so fundamental—and a reminder that sometimes the conversations we need most are about the things we rarely talk about.

If you or someone you love is living with cystic fibrosis, I hope this encourages you to ask about sleep at your next clinic visit. It could make a bigger difference than you realize. Thank you.

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Hi everyone, The Bonnell Foundation’s mission has always been deeply personal. As we celebrate our Sweet 16 Night of Hope Gala on September 19th, it’s a perfect time to reflect on why this work matters so much.

What started with a need to help families navigating cystic fibrosis has grown into a community of support, education, advocacy, and financial assistance. When Molly was diagnosed with CF, there were far fewer resources available to families. The Bonnell Foundation was created to help fill those gaps — from medical bills and hospital support bags to lung transplant grants, education scholarships, and so much more.

Over the past 16 years, we’ve seen firsthand what that support can mean. Families have reached out to share how assistance with a bill, respiratory equipment, or a difficult hospital stay helped them get through a challenging moment. These aren’t simply programs — they can be lifelines for families when they need them most.

And while cystic fibrosis continues to bring enormous challenges, there is also so much reason for hope. Research, new treatments, advocacy, and the dedication of families and organizations around the world continue to move the CF community forward.

At the Bonnell Foundation, that hope is reflected in every dollar raised and every family we support. Our Sweet 16 Gala is more than a fundraiser. It’s a celebration of resilience, generosity, and community — and a reminder that together, we can make a difference.

If you can join us on September 19th, your presence helps fuel this mission. And if you can’t attend, a donation can still make a meaningful difference for a family living with cystic fibrosis.

Thank you for being part of this journey, for believing in our mission, and for helping us bring more support, more resources, and more hope to families living with CF.

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Friends for years and with CF as their connection, Laura and Petrina have figured out how to raise CF awareness across the world.

How does cystic fibrosis care compare between Australia and the United States? Host Laura Bonnell talks with Petrina Fraccaro, CEO of CF Queensland, about her journey into CF advocacy, the mission of CF Queensland, and the support available to individuals and families living with cystic fibrosis.

Laura and Petrina also discuss the global landscape of cystic fibrosis, including advocacy, carrier screening, and international collaboration. They share insights from worldwide conferences, highlight the importance of community support, and explore opportunities to improve access to care and medications for people living with CF around the globe.

As cofounders of the CF Global Advocacy Alliance (CFGAA), the women talk about how organizations around the world are working together to create a brighter future for the CF community.

A Personal Connection to Cystic Fibrosis
Petrina’s path to CF advocacy is an interesting one.

With a background in public relations, education, and working to empower women, she eventually began looking for an opportunity in the not-for-profit world. She wanted to use her skills for something meaningful, particularly for a chronic illness that many people didn’t understand.

But CF wasn’t completely unfamiliar to her.

As a child, Petrina had watched a family friend live with cystic fibrosis. That early experience stayed with her and eventually helped lead her into a career advocating for people and families affected by CF.

Today, that passion has grown into leadership at Cystic Fibrosis Queensland, where she works to make sure people living with CF and their families have the resources, support, and advocacy they need.

Supporting Families Through Cystic Fibrosis Queensland
Cystic Fibrosis Queensland provides support across Queensland and the Northern Territory, helping families navigate the financial, emotional, and practical challenges that come with CF.

Petrina talked openly about the challenges the organization has faced, including financial sustainability. Rather than trying to do everything, she focused on listening to the CF community and identifying the services that were most important.

Those services include:

• Medical subsidies to help families manage the costs associated with CF care.
• Specialty grants that can help provide equipment such as nebulizers and oxygen concentrators.
• Education scholarships that help people with CF pursue college, training, and career opportunities.
• Mental health support for people with CF, their families, and caregivers.

What struck me throughout our conversation was how much of this work comes down to one simple idea: people should not have to navigate CF alone.

Why Awareness and Education Still Matter
It can be easy to look at the incredible advances in CF treatment and think that we have solved many of the problems associated with the disease.

We haven’t.

While CF treatments have changed dramatically—and modulators have given many people with CF opportunities that previous generations never had—there are still people who are diagnosed late, people who don’t have access to the newest treatments, and families who don’t understand what CF means when it enters their lives.

Petrina talked about the importance of reaching immigrant and multicultural communities in Australia, where cystic fibrosis may not be well understood or even recognized.

That education extends beyond families. Healthcare professionals and the broader community also need to understand CF so that people can be diagnosed as early as possible and connected with appropriate care.

The Importance of Carrier Screening
One of the topics we discussed that I think deserves much more attention is genetic carrier screening.

Cystic fibrosis is an inherited condition, and a person can be a healthy carrier without ever knowing it. In Australia, Cystic Fibrosis Australia estimates that approximately 1 in 25 people carry a CF gene change, and most carriers are unaware of their status.

Research from Australia also demonstrates just how important broader carrier screening can be. In a study of 12,000 people undergoing reproductive carrier screening for CF, spinal muscular atrophy, and fragile X syndrome, 342 people were identified as CF carriers, about 1 in 34 people screened. Approximately 88% of the people identified as carriers had no known family history of the condition.

That last statistic is especially important.

You don’t have to have a family history of cystic fibrosis to be a carrier.

Australia took an important step in November 2023 when reproductive carrier screening for CF, spinal muscular atrophy, and fragile X syndrome was added to the Medicare Benefits Schedule for people who are pregnant or planning a pregnancy. Testing has increased significantly since then, although there is still a need for greater awareness and education about carrier screening.

For me, this is another reminder that education can change lives. Knowing your carrier status can give people information they can use when making decisions about starting or growing their families.

Mental Health Is Part of CF Care
Another part of our conversation that really stood out to me was mental health.

Living with CF is not just about medications, clinic appointments, hospitalizations, treatments, and lung function numbers. It can affect every part of a person’s life, and it affects the entire family.

Cystic Fibrosis Queensland has developed mental health programming that supports people with CF as well as their families and caregivers. Petrina also talked about mental health first-aid training, which can give people the tools to recognize when someone may be struggling and help connect them with appropriate support.

We also talked about something that comes up frequently in advocacy: the power and responsibility of sharing your story.

Personal stories can educate people, change hearts, raise money, and influence policy. But constantly telling your story can also be emotionally exhausting.

That means we need to make sure the people sharing their experiences are supported, too.

Advocacy Is About More Than Awareness
One of my biggest takeaways from talking with Petrina is that advocacy isn’t just about making people aware that cystic fibrosis exists.

It’s about changing systems.

It’s about making sure families can afford the care they need. It’s about access to medications and equipment. It’s about education. It’s about mental health. It’s about genetic screening. It’s about making sure people in every community—including communities where CF may be less recognized—have access to knowledgeable healthcare.

And it’s about making sure that progress in CF doesn’t leave people behind.

Looking Toward the Future
Petrina’s journey is a great example of what can happen when someone combines professional skills with a personal passion for making a difference.

Our conversation reminded me that the CF community has come incredibly far, but there is still so much work to do.

The treatments may be changing. The life expectancy for people with CF is changing. The way we think about CF is changing.

But the need for advocacy, education, support, and connection isn’t going away.

And that’s why conversations like this matter.

I’m grateful to Petrina—not only for the work she does every day for the CF community in Australia, but for the friendship we’ve built through our shared commitment to making life better for people and families living with cystic fibrosis.

To learn more about CF Queensland, Australia https://www.cfqld.org.au
For more about CF Global Advocacy Alliance https://cfgaa.org.au
For more about the European CF Society and the conferences they hold https://www.ecfs.eu

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What would you do if you didn’t know what your future held?

For people living with cystic fibrosis, uncertainty is often a constant companion. Inka Nisinbaum faced one of the biggest unknowns of her life as she waited 15 months for a double lung and liver transplant. Every day brought the same question: Would she survive long enough to receive the gift of new organs?

Rather than let fear define her, Inka prepared for every possibility. She created a list of dreams she would pursue if she lived and a bucket list in case she didn’t.

Then she did something even more powerful—she fought. She refused to give up, pushed through impossible challenges, and ultimately built a life beyond what anyone thought possible. Her story is a reminder that while we can’t always control the future, we can choose how we face it.

Born with cystic fibrosis and given just four years to live, Inka Nisinbaum defies every expectation. At 22, she survives a rare double lung and liver transplant after waiting more than a year for a donor, beginning a long and difficult recovery that eventually gives her nearly 17 years of stability.

But in 2019, she’s hit again with chronic lung rejection—what she calls a “second death sentence.” With her lung function rapidly declining, she fights back the only way she knows how: by running.

Starting from just one minute at a time—even while hospitalized with a PICC line, she slowly rebuilds her strength and goes on to complete a half marathon. Against the odds, her lung function stabilizes and she regains her life again.

Her journey becomes even more extraordinary as she moves to the U.S., gets married, and becomes the first woman known to have a baby after a double lung and liver transplant.

To buy her book: https://read.amazon.com/sample/B0H1SFYZCH?clientId=share

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Luck of the Irish. Irish international amateur golfer David Howard doesn’t seem to need luck with all the talent he has. We had an inspiring conversation about chasing big dreams while living with cystic fibrosis. When we recorded this podcast David had not yet qualified for the Open Championship. He did qualify just after we recorded and went on to play. Quoting from the Open Championship paper, “On the course, Howard more than held his own alongside the world’s best. He started with a four-over-par 74 before finding his groove on Friday. A birdie at the 11th was his fourth of the day and took him to +2, within sight of the cut line. Howard ultimately missed out, dropping a shot at 14 to finish three-over for his week, but took heart from his display.” Bravo David! You’re an inspiration.

David shares his journey growing up in Cork, Ireland, where he was diagnosed with CF at the age of seven and learned to balance daily treatments, hospital stays, and the demands of competitive golf. He also explains how his golfing journey began with Pitch and Putt, a sport similar to golf that features shorter holes and requires just a few clubs. The game helped him develop his skills and passion before transitioning to competitive golf. David talks about how advances in CF care have transformed his health, allowing him to compete at the highest levels of amateur golf while representing Ireland on the international stage.

The conversation explores David’s breakthrough victories, including winning the prestigious East of Ireland Amateur Championship, his ambitions of turning professional, and the discipline and mental resilience required to compete in elite sports. He also shares practical tips on how he stays mentally focused during a golf tournament, manages pressure, and keeps his confidence throughout competition. David reflects on the important role his family, coaches, and teammates have played throughout his journey.

Beyond golf, David opens up about the emotional side of living with cystic fibrosis, the importance of talking openly about chronic illness and mental health, and why he is passionate about raising awareness through fundraising and advocacy. He also shares his hopes of writing a book one day and inspiring the next generation of young people living with CF to believe that their diagnosis does not have to define their future.

Whether you’re a golf fan, part of the cystic fibrosis community, or simply love stories of perseverance, this episode is a reminder that determination, support, and advances in medicine can make extraordinary dreams possible.

David is an ambassador for Cystic Fibrosis Ireland. https://www.cfireland.ie

Thanks to Nicola Delaney-Foxe for connecting us!

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Dreams and Determination: Meet four Inspiring students, Living with cystic fibrosis.

One of the greatest joys of The Bonnell Foundation is helping young adults living with cystic fibrosis pursue their educational dreams. Every year, we award scholarships to students attending universities, trade schools, and community colleges. While these scholarships help with tuition and expenses, they also send an important message: we believe in these students and in the futures they are building.

Living with cystic fibrosis often means balancing classes, careers, friendships, and family life alongside daily treatments, medications, and frequent medical appointments. For many families, the financial burden of CF can make the cost of higher education even more challenging. That’s why our scholarship program is so meaningful. Each year, our top recipients receive $2,500 to help them continue their education and pursue their goals.

The thank-you notes we receive from recipients are heartfelt reminders that a scholarship is about much more than money. It is about hope, opportunity, and encouragement.

On this week’s podcast, we are honored to introduce four remarkable scholarship recipients whose determination and resilience inspire us.

Serena Scillia is a 20-year-old from Westerville, Ohio, attending Bowling Green State University. Serena is studying Early Childhood Education and hopes to become a teacher. When she’s not focused on her studies, she enjoys coaching volleyball, reading, and spending time with her family and beloved dog. Serena’s passion for helping others shines through in her career choice, and she’s determined to make a difference in the lives of children.

Jayla Jacobs has been living with cystic fibrosis since she was diagnosed at age five. Now 18 years old, she has already become a powerful advocate for the CF community. Jayla has spoken at multiple fundraising and awareness events, including the Cystic Fibrosis Foundation’s Guys and Dolls Auction Gala, where she helped raise an incredible $2.2 million for CF research. This fall, she will begin studying English at North Carolina State University. Jayla loves outdoor adventures, drawing, and writing stories. She also understands the impact of CF on families, with two of her brothers living with the disease as well.

Isabella Banaszynski is preparing for an exciting new chapter as she heads to Drexel University in Philadelphia this fall. An accomplished club wrestler and aspiring architect, Isabella has already demonstrated the discipline and determination needed to succeed in demanding environments. She plans to major in Architecture while continuing to pursue her athletic interests. Isabella’s journey is proof that living with CF does not define what is possible.

Ben Ferguson attends Taylor University and is majoring in Finance. Originally from Columbus, Indiana, Ben comes from a large family with four brothers and one sister. While he is the only member of his family living with cystic fibrosis, he has never allowed the disease to limit his ambitions. Ben is focused on building a successful future while managing the daily challenges that come with CF.

These four young adults represent the strength, perseverance, and optimism that define so many people in the cystic fibrosis community. Their stories remind us that while CF can create obstacles, it does not determine a person’s potential.

Join us on this week’s podcast as Serena, Jayla, Isabella, and Ben share their experiences living with cystic fibrosis, pursuing higher education, and what receiving a Bonnell Foundation scholarship means to them. Their stories are inspiring, their goals are ambitious, and their futures are bright.

This is exactly why The Bonnell Foundation continues its scholarship program year after year: to invest in dreams, support determination, and help the next generation of leaders living with cystic fibrosis reach their full potential.

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I thoroughly enjoy doing my podcasts. It’s the one thing I truly miss from my television news reporting days — interviewing extraordinary people every single day. Through The Bonnell Foundation, I now host a weekly podcast, and honestly, I wish I could do them daily. Not only does it bring me so much joy, but it also gives me the opportunity to share the stories of the incredible people I meet along the way.

Kate O’Donnell is one of those people.

Kate was inspired by a brother she never met. Her brother Joey died from cystic fibrosis just three months before she was born. CF is a brutal disease, but the community that rises from this tragedy is filled with some of the most inspiring, compassionate, and courageous people you will ever meet.

Kate’s father, Joe O’Donnell, became one of the cystic fibrosis community’s most influential volunteer leaders and fundraisers. Together with his wife Kathy, he founded The Joey Fund in memory of Joey. Today, Kate is helping carry that legacy forward and bringing new energy and passion to the mission.

And trust me — by the end of this podcast, you’re probably going to want a Joey hat of your own. You can support The Joey Fund here: https://joeyfund.org/donate-1

Kate is smart, fun, energetic, and deeply committed to making a difference in the CF community. I know you’ll be inspired by everything she continues to do.

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Jon Gay and I had a great time recording this podcast because we not only talked about podcasting, but also reflected on our years in the broadcast business and what people should know before starting a podcast of their own. There’s a lot of laughter, behind-the-scenes stories, and practical insight for anyone curious about the world of audio storytelling.

Jon and I go way back to our radio days. We worked at different stations in the same building, crossing paths in a fast-paced world built on deadlines, storytelling, and finding the right words at the right moment. Radio teaches you quickly how to think on your feet, write with purpose, deliver information clearly, and connect with people through your voice.

What’s interesting is that neither of us spent much time trying to “sound like radio people.” We focused on being authentic, credible, and conversational. The voice came naturally because the storytelling mattered more than the performance.

For me, podcasting became a natural extension of the work I do with my Foundation. It gave me a platform to continue having meaningful conversations, telling important stories, and creating a space where people feel comfortable enough to share their experiences honestly.

That’s one reason I was thrilled to eventually hire Jon as my podcast editor. I already knew his professionalism, creativity, and work ethic from our radio days, and he understood the heart behind what I was trying to create. Jon has a real talent for shaping conversations into stories that people genuinely connect with.

In this episode, we talk about the evolution from radio to podcasting, the art of authentic storytelling, and why genuine connection matters more than ever in today’s media landscape.

And finally, Jon, it seems like everyone wants to start a podcast these days. I can’t tell you how many people ask me where to begin, and honestly, I don’t always have the time to walk everyone through it. So when someone comes to you and says, “I want to start a podcast,” what’s the very first thing you tell them?

If you want to talk with Jon you can contact him here: jag@jagpodcastproductions.com

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“Many people have their own thing that lights them on fire, for me, it’s running” say Katie O’Grady.

CF modulator drugs changes are a game changer for people living with cystic fibrosis.

Katie O’Grady’s story is a powerful reflection of how dramatically life with cystic fibrosis has changed in the era of CF modulators, and what becomes possible when hope replaces survival mode.

A runner, speaker, and cystic fibrosis advocate in Boston, Katie redefined what it means to live with CF. Katie inspires us by talked about her shift in mindset and how it changed everything: she stopped thinking of herself as “a CF patient who runs” and began identifying as “a runner who happens to have CF.” That subtle but profound change transformed not only the way she trained, but the way she cared for herself, viewed her future, and moved through the world.

For much of her life, Katie lived the reality many people with CF know too well — moving from infection to infection, never fully certain what the next year, or even the next season, might bring. At 18, she battled a devastating case of pneumonia that forced her to confront the fragility of her health. But in 2019, everything changed with the arrival of Trikafta. For the first time, Katie could imagine a future without immediately attaching fear or limitations to it.

She speaks candidly about what it means to rebuild trust in your body after years of illness, and how running became far more than exercise. It became freedom, therapy, identity, and proof that her diagnosis did not get to define the boundaries of her life. Katie opens up about taking the longest break from running she’d ever experienced, wondering if she would ever return, and discovering that what she missed most wasn’t competition — it was the clarity, peace, and sense of self she found while moving.

To watch on YouTube: https://www.youtube.com/watch?v=zzdQraUAPfc
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“Take in your final breath before your first new one.” Those were the words Jillian heard before her double lung transplant—words that would mark the end of one life chapter and the beginning of another.

Jillian is 34 years old, living with cystic fibrosis, and a double lung transplant recipient. Her story is one of resilience, loss, hope, and purpose. From being diagnosed at birth to navigating adulthood, Jillian has faced more than most, but she continues to show up for her life and for others in the cystic fibrosis community.

Jillian shares what it was like growing up with CF, supported by family and shaped by early connections within the community. She reflects on how advocates like Emily Schaller and the Rock CF Foundation influenced her outlook and helped her feel less alone.

We also talk about her college years, what it meant to pursue independence while managing a complex disease, and how life shifted as her health declined into end-stage lung failure. Jillian walks us through the transplant process, not just medically, but emotionally—the fear, the uncertainty, and the strength it takes to keep going.

One of the most profound parts of Jillian’s story is the loss of her twin brother. She opens up about that grief and how it continues to shape her perspective, her resilience, and her compassion for others.

Throughout it all, Jillian emphasizes the importance of support systems and mental health—especially during the transplant journey. No one goes through something like this alone, and her story is a reminder of how critical connection and care truly are.

Today, Jillian looks toward the future with hope. She shares her dreams of building a family, continuing her advocacy work, and expanding the impact of the nonprofit she founded, Jillian’s Jay Walkers Organization.

Her story is not just about survival—it’s about living with intention, honoring loss, and creating something meaningful from it all. 💜

What Jillian hopes to do as her Foundation grows:

2026 program updates:

Nutritional Support- grocery assistance, food journal (In the future I would like to partner with a RD and/or Nutritionist to help provide personalized recommendations, meal planning, recipes, etc.)

Home Air Quality Support- air filter units and humidifier devices

Peer Mentorship- 1:1 coaching to help with weight management and treatment adherence

Hospital Comfort Blankets- handmade by volunteers for CF children in the hospital

Contact Jillian here: Email: Jill@jilliansjaywalkers.org

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“Behind every breakthrough are countless failures no one ever sees—but that’s exactly what makes progress possible.” Dr. Thomas Kaiser.

When I have scientists on the podcast: they’re some of the coolest, smartest, funniest people, and they’re always willing (and excited) to explain what they do in ways you can actually understand.

Dr. Tom Kaiser is no exception.

He lives and works in Durham, North Carolina, and brings together an impressive mix of scientist, physician, and entrepreneur. His work focuses on designing better medicines using cutting-edge technology. He began his career at Emory University in Dennis Liotta’s lab, working on antiviral drug discovery, and later helped pioneer early machine learning approaches in drug design. His research spans RSV, cancer, and neurodegenerative diseases, and he went on to earn his medical degree from the University of Oxford.

Tom is now the co-founder and Chief Scientific Officer of Avicenna Biosciences, where he’s leading the development of innovative therapies aimed at improving and saving lives. And my favorite detail from his bio? He ends it by mentioning the love of his life, his wife.

I’ll be honest, when I first met him, I told Dr. Kaiser he seemed like someone who must have been in a movie. He’s just that cool.

His Company: Dr. Thomas Kaiser shares the story behind his company’s name, Ibn Sina, also known as Avicenna a true Renaissance figure of the Islamic Golden Age. A physician, philosopher, and scientist, Ibn Sina embodied the kind of multidisciplinary thinking that still drives innovation today. It’s a powerful reminder that the roots of modern medicine, and the spirit of discovery stretch back centuries.

The Part We Don’t Talk About Enough

Science is not a straight line. Not even close.

Experiments fail. Clinical trials don’t work. Hypotheses fall apart after years of effort. Funding can disappear. Progress can stall in ways that are frustrating and sometimes heartbreaking especially when patients are waiting.

Dr. Kaiser speaks about this with a clarity and calm that really stayed with me.

Because the truth is: scientists have to keep going anyway.

They carry the weight of those disappointments and start again. They adjust, rethink, rebuild, and try again. Over and over.

And that persistence? That’s where breakthroughs come from.

From the outside, it’s easy to celebrate the wins … the new drug, the successful trial, the headlines. But behind every one of those moments are countless failures no one ever sees.

For families like ours, waiting, hoping, advocating it matters to understand that this difficult process is also what makes progress possible.

Living the Dream

What if you actually got to live the dream you had as a kid?

In this conversation, Dr. Thomas Kaiser shares something surprisingly personal: he feels lucky to be doing exactly what he dreamed of as a child. That early curiosity grew into a career designing new medicines and pushing the boundaries of science.

From imagination to impact, his journey is a reminder that sometimes those childhood passions really can shape the future.

Go to Dr. Kaisers website:
https://www.avicenna-bio.com

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Living Fully with CF: Christopher Cornejo’s Journey from Diagnosis to Avatar

This fast-moving and deeply engaging conversation features Christopher Cornejo, who brings a fresh and powerful voice to the cystic fibrosis community.

Diagnosed with CF as an adult just three years ago, Christopher has quickly become an advocate, sharing his story on stage at a UCLA CF symposium and being honored by the Cystic Fibrosis Foundation as one of Southern California’s Finest.

What makes Christopher’s story especially compelling is his perspective, shaped not only by his diagnosis, but by his career in film, including his work as a technical director on Avatar 2 and 3.

In this heartfelt interview, Christopher opens up about his late diagnosis, navigating medical challenges, and how openness, community, and resilience have shaped his journey.

We talk about his later diagnosis, balancing his health and his demanding film career, the importance of community and support along with his mental health and resilience.

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A mother, advocate and one woman’s global fight for access. Beth Vanstone is working to ensure rare disease patients don’t have to wait for the treatments they need to survive.

Sometimes the most powerful friendships begin in the most unexpected places. Beth Vanstone and I first connected on social media. At the time, we were simply two moms navigating the complicated, emotional, and relentless world of cystic fibrosis. But eventually the online messages turned into something more meaningful. Then, Beth attended one of The Bonnell Foundation’s Gala events. That’s when we finally met in person. And from that moment on, we became dear friends. It’s proof that social media, when used for connection and purpose, can build incredible relationships.

But what inspires me most about Beth isn’t just our friendship. It’s her relentless determination.

Beth is the mother of Madi, who was diagnosed with cystic fibrosis at just eight months old. Suddenly Beth was navigating a healthcare system, researching treatments, learning medical language, and fighting for her daughter’s future. Beth didn’t stop there. Instead of focusing only on her own family, she chose to fight for every family. Today, Beth is a powerful advocate in Canada and a member of the Ontario Rare Action Group, where she works to improve access to life-saving therapies for people living with rare diseases like Cystic Fibrosis.
And the reality she’s fighting against is one many people don’t understand.
Most healthcare systems, not just in Canada but around the world were built to treat common diseases. They weren’t designed for rare conditions that affect smaller populations. Because of that, patients with rare diseases often face enormous barriers: long approval timelines, delayed access to medications, and exhausting advocacy battles just to receive treatments that already exist.
In some cases, patients wait months — even years — for medications that could dramatically improve or extend their lives.
Beth is working to change that.
Through her advocacy, she’s pushing for reforms that could make a real difference for patients across Canada and beyond:
• Faster access to innovative therapies
• Improved newborn screening programs
• Better diagnostic pathways
• Centers of excellence for rare diseases
• Removing financial barriers like deductibles that prevent families from accessing public programs
And she’s also raising an important global conversation.
Here in the United States, lawmakers have debated policies like the Most Favored Nation Model, which look to international drug pricing systems like those in Canada and Europe as a model.
But Beth reminds us that every system has challenges, and for rare disease patients, those challenges can be life-changing.
Because when access to medication is delayed…
Access is denied.
And that’s why advocacy across borders matters.
She’s not just advocating for her daughter.
She’s advocating for every patient still waiting for their breakthrough.

And today, we’re talking about what needs to change and how all of us can help make it happen.

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Bridging Two Countries, One Mission: Cesar and Nora Hernandez Fight for Spanish-Speaking CF Families

“When Alex was diagnosed, we felt fear and responsibility. If we had access to information in Spanish, other families should too. No one should feel lost because of language.” Nora Hernandez

From Mexico to Mission: How Cesar and Nora Hernandez Are Closing the CF Information Gap for Hispanic Families.

“I came to this country to build a better future for my family. I never imagined that future would include fighting for awareness about cystic fibrosis, but now it’s part of our mission.” Cesar Hernandez

Cesar and Nora Hernandez were both born in Mexico, where accurate and accessible information about cystic fibrosis has not always been readily available. While progress is being made, with more experienced physicians and improving CF care, there is still significant work to do.

In the United States, members of the Hispanic community are often underdiagnosed or diagnosed later than others. That gap in awareness and access is one of the reasons The Bonnell Foundation launched its CF Familia page, offering reliable information in both English and Spanish to help families navigate the complexities of cystic fibrosis.

Cesar and Nora serve as ambassadors for this effort, creating videos that provide education, updates, and reassurance to Spanish-speaking families. Cesar also serves as a board member of The Bonnell Foundation, and we are deeply grateful for his leadership and heart for this community.

Cesar originally came to the United States to build a better life and financially support his family in Mexico. After meeting Nora, he made the decision to stay and make the U.S. his permanent home. Together, they are raising two children, Scarlett and Alex, who was diagnosed with cystic fibrosis.

Their story is one of resilience, faith, cultural pride, and advocacy.

Transcript is also available on this podcast.

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I first met Margarete Cassalina when we were hosted for dinner by Bob Emmelkamp at the North American Cystic Fibrosis Conference (NACFC). We connected immediately. There was an ease to our conversation, a shared understanding that doesn’t require much explanation in the cystic fibrosis community.

And I have to say, her husband Marc is just as wonderful. They are the kind of people you feel grateful to know. I’m so glad we are in this CF life together.

Margarete is an author, speaker, and longtime advocate and fundraiser for the Cystic Fibrosis Foundation. But long before the stages, the fundraising events, and the national advocacy, she was a mom navigating the daily realities of cystic fibrosis.

In 2006, her 13-year-old daughter, Jena, died from CF.

In the depths of unimaginable grief, Margarete made a powerful decision: she would honor Jena’s life not only with love, but with action. Since then, she has dedicated herself to storytelling, advocacy, fundraising, and speaking across the country about resilience, motherhood, loss, and the urgent need for continued research.

Margarete’s son, Eric, also lives with CF, and in this episode you’ll hear more about how he’s doing and what life looks like for their family today.

This dynamic, incredible woman will inspire you. Her story is not only about loss it’s about purpose. It’s about choosing to move forward when standing still might feel easier. And it’s about doing great things in the name of someone you love.

To find her books go to Amazon.

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Education, connection, and community are at the heart of our CF community.

On Saturday, April 18th from 11:00 a.m. to 1:30 p.m. we gathered at the Next Step Gallery in Ferndale. Set in a bright gallery space surrounded by art, the event offered a welcoming environment for meaningful conversation, learning, and connection. It was pure joy with the smell of great food in the air. Food from my sister in laws restaurant, Bangkok Cuisine (in Royal Oak) filled the air, it smelled amazing and filled the air.

Education Day is more than a traditional event. It’s an opportunity for people living with cystic fibrosis, parents, caregivers, healthcare professionals, and advocates to gather in one space to share experiences and support one another.

A highlight of the afternoon was our “live” podcast recording, offering attendees a chance to hear authentic conversations about life with cystic fibrosis, advocacy, and the challenges and hopes shaping the community today.

We all talked about education, advocacy, and what lies ahead for the CF community. The relaxed setting allowed people to connect not just through information, but through shared experiences.

Events like Education Day help strengthen the bonds within the CF community by reminding everyone that they are not alone in their journey.

Whether you are living with CF, raising a child with the disease, working in healthcare, or supporting someone you love, this gathering is meant to inform, inspire, and bring people together.

Every story matters. Every voice matters. And every person who attends becomes part of the conversation.

To watch the the premiere of our Embracing Egypt podcast enjoy it here: https://youtu.be/SlMscQ6Spjg

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“Being a CF aunt has shaped so much of my life. Now I get the opportunity to turn that love and connection into helping even more people at Breathe Strong CF.”

Julie Dunn Eichenberg didn’t just find the cystic fibrosis community, she’s been part of it for more than 30 years as a proud CF aunt.

That personal connection is what makes this next chapter so meaningful.

Julie recently stepped into the role of Executive Director at BreatheStrong CF, where the focus is on helping people with cystic fibrosis live stronger, healthier lives through exercise, education, and empowerment. And while she brings decades of experience in leadership, fundraising, and relationship-building, she’s honest about getting used to the role.

She’s learning. Listening. Figuring out the day-to-day. And really taking the time to understand how she can best serve the community in this new position.

Before this, Julie spent 20 years at Turner Broadcasting System (now part of Warner Bros. Discovery), and later held leadership roles at Florida State University and Fan Data Insights. But no matter where her career took her, the CF community was always part of her life.

She’s also been deeply involved with the Cystic Fibrosis Foundation, serving as Chair of the Georgia Chapter and contributing at the national level.

We talk about what it feels like to step into a leadership role that’s so personal. The excitement, the pressure, and the responsibility that comes with it. Julie shares what she’s learning, what’s surprised her, and why her connection as a CF aunt continues to guide every decision she makes.

Because for Julie, this isn’t just a job, it’s personal.

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Men with CF and Infertility: The Science, The Options, The Hope.

Pete Proimos is an entrepreneur, a chronic illness advocate, and the founder of the Filotimo Foundation, a nonprofit dedicated to supporting individuals and families affected by cystic fibrosis. Diagnosed with CF as an infant, Pete kept his diagnosis private for decades. It wasn’t until his forties that he chose to speak publicly about living with the disease, and that brave decision has changed lives.

Pete is married to Annie, and together they are raising three children. His journey into fatherhood is part of what fuels his passion to make sure others with CF understand their options when it comes to building a family.

Joining him in this important conversation is Colin Thomas, who leads the Family-Building Program at the Filotimo Foundation. Colin also lives with CF and became a father of five through IVF. In addition to his advocacy work, he serves as Vice President of Operations at IVY Fertility. He brings both professional expertise and deeply personal experience to this discussion, sharing honestly about the challenges and triumphs of becoming a parent with CF.

One critical truth we discuss: Men with cystic fibrosis are not infertile because they don’t produce sperm. Most are born without a connected vas deferens — the tube that carries sperm — which makes natural conception difficult. But with medical support, including sperm retrieval and IVF, biological fatherhood is often absolutely possible.

This episode dives into the mission behind the Filotimo Foundation and the powerful work being done through its infertility and family-building program, work that is giving hope, clarity, and real options to families navigating CF.

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Three decades caring for patients with CF, that’s Dr. Alan H. Cohen. His experience continues to shape everything he does today. As a pediatric pulmonologist (board-certified) , he has walked alongside patients through some of their hardest moments, including advanced lung disease and transplantation. Dr. Cohen was previously co-director of the largest pediatric lung transplant program in North America.

Those years at the bedside are what ultimately led Dr. Cohen into drug development, where he has spent more than 25 years working to turn scientific innovation into real-world therapies for people who are still waiting for better options. As the Chief Medical Officer of Arcturus Therapeutics, he brings both clinical perspective and urgency to the company’s work in mRNA-based therapies for cystic fibrosis and other rare diseases.

“Clinical trials aren’t just about science, they’re about people who are willing to help move the field forward.”

In this thoughtful and engaging conversation, Dr. Cohen reflects on how cystic fibrosis care has evolved over the past 35 years, from symptom management to breakthroughs in gene therapy and mRNA technology. Dr. Cohen discusses why clinical trials are essential to progress, especially for rare diseases, and why patient participation plays such a critical role in moving new therapies forward. Dr. Cohen also shares how the strength of the CF community continues to inspire his work, offering both realism and hope for the future of CF research.

You’ll also hear more about the personal side of this wonderful scientist! The Arcturus team packed Bonnell Foundation Hospital Bags with comfort products for caregivers, and CF adults for California CF Clinics. #teamwork

Clinical trials are an important step to understand whether a medicine works for its intended purpose. Please see our active clinical trials below. For any questions email: Community@ArcturusRx.com.

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I’ve known Julie McCaffrey for years. She lives about 40 minutes from me, in Romeo, Michigan. Julie and her husband, Curtis, are raising four daughters, and their oldest, Jenna—now 20—lives with cystic fibrosis.

What still makes me smile is how Julie and I were connected long before we ever met through the CF community… and we had no idea. We worked in the same building, in the same industry, at the same time. Both of us were in radio. I was a news reporter at WWJ, while Julie was a producer at WYCD. Even our podcast editor worked at another station in that very same building. Proof that sometimes the universe plants people in your orbit long before it tells you why.

Julie’s career path reflects both her curiosity and her compassion. She’s worked in radiology, orthopedics, and labor and delivery. She’s supported students as a paraprofessional in an elementary school and worked in a group home for adults with intellectual disabilities. Today, she works at Target—and genuinely loves it. Wherever she goes, she brings the same energy: presence, kindness, and care.

At the heart of everything Julie does is a simple but powerful mission—to spread joy. She is deeply passionate about mental health advocacy, especially within the cystic fibrosis community. And despite the very real financial strain that comes with healthcare and insurance challenges, Julie continues to show up with an unwaveringly positive spirit. Not a performative positivity—but a grounded, generous kind that makes people feel seen.

If you take just one thing from Julie today, let it be this:
You are brilliant.
You are beautiful.
And you can do anything.

(Suicide was discussed in this episode. Anyone needing help can call or text #988).

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“What if a blood draw didn’t have to feel terrifying, Abby Rose is a child life specialist. And if you have never taken advantage of all they have to offer when your child is hospitalized, you’re going to want to connect with them after you listen or watch this podcast!

The North American Cystic Fibrosis Conference is one of those places you attend to learn—but it’s also a place where you meet people who quietly leave a lasting mark. One of those people is Certified Child Life Specialist Abby Rose.

Abby works at Seattle Children’s Hospital, supporting both the Cystic Fibrosis program and Pediatric Hemodialysis. Originally from Wisconsin, she earned her bachelor’s degree in Psychology and Family Studies from the University of Wisconsin–Eau Claire, followed by a master’s degree in Child Life from Edgewood College.

In her role, Abby focuses on outpatient care, working closely with children and families to create individualized coping plans. She supports kids through procedures many of us take for granted—blood draws, throat swabs, vaccinations, while also helping families navigate pill swallowing, treatment tolerance, sibling support, and the everyday challenges that can feel overwhelming in CF care.

People like Abby made a profound difference for kids like one of my daughters—children who are frightened by procedures or don’t fully understand what’s about to happen to them. Child Life Specialists play a critical role in hospital settings, helping children feel safer, more informed, and more in control during some of their most vulnerable moments.

Today, I’m excited to talk with Abby about the work she does—and why it matters so deeply.

In our conversation, we’ll explore:

The Beads of Courage program and why it’s so meaningful to children and families

Why Abby is such a strong advocate for transparency, open communication, and the rights of patients and families

What draws her personally to Child Life work, and why she believes in it so deeply

And some of the “tricks of the trade”—the practical tools and techniques she uses to help kids feel calmer and more cooperative during procedures like blood draws

This is a conversation about care, trust, and the people who help make hard moments just a little bit easier.

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Diagnosed with cystic fibrosis at the age of fifty, Sheri Boyd brings a rare and powerful perspective to the CF community, one shaped by decades of undiagnosed illness, years of caregiving, deep resilience, and a strong foundation of faith. Sheri is a passionate advocate and, alongside her husband Shawn, co-founded S and S Rocks Life, a platform rooted in honesty, creativity, and hope.

Sheri and Shawn share a uniquely intertwined journey. Shawn also lives with CF and is a double lung transplant recipient, and together they navigate post-transplant life with grit, transparency, and determination. They openly share both the challenges and the victories, offering a real and unfiltered look at what it means to live, and love, through cystic fibrosis.

Through storytelling and advocacy, Sheri uplifts the CF community and supports CF-focused nonprofit organizations, drawing insight directly from lived experience. With a fascinating background in the music industry, Sheri also brings a distinctive lens to conversations about identity, judgment, and the courage it takes to show up authentically. Her story isn’t about the absence of hardship, it’s about perseverance, purpose, and choosing hope, even in the hardest moments.

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“Patients are waiting…”

Those simple but profound words from Dr. Steve St. Onge set the tone for this conversation, and for why this work matters so deeply.

Science has always fascinated me. I often joke that I’m not smart enough to be a scientist, but I have endless respect for the people who are, especially those who can take incredibly complex ideas and explain them in a way the rest of us can truly understand. This is why I know you’re going to love my conversation with Dr. St. Onge.

Steve is the Chief Business Officer at Clarametyx. Dr. St. Onge is a PharmD and MBA with more than 15 years of experience spanning clinical care, medical affairs, and leadership in biotechnology. What stands out most about Steve isn’t just his impressive résumé, it’s his ability to clearly explain the science, the strategy, and, most importantly, the urgency behind the work Clarametyx is doing.

I first met Steve in person at the North American Cystic Fibrosis Conference (NACFC) in Seattle, where we had the opportunity to really connect and talk about Clarametyx’s approach. Their work focuses on targeting biofilm-driven inflammation and progressive lung damage, an area of significant unmet need for people living with chronic respiratory diseases, including cystic fibrosis. In this conversation, Steve breaks down what biofilms are, why they’re so difficult to treat, and how Clarametyx is thinking differently about tackling the inflammation and lung damage they cause.

We also talk about the long road of drug development, the responsibility that comes with working in rare disease, and why the phrase “patients are waiting” isn’t just a saying, it’s a call to action. This episode is an honest, accessible, and hopeful look at science in motion, and at the people behind the research who are driven by the patients counting on progress.

If you’ve ever wanted a clearer understanding of how innovative science moves from idea to impact—and why time matters so much, his is a conversation you won’t want to miss.

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Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Somer Love has spent her life choosing hope, dreaming big, and showing up fully for each day. Diagnosed with cystic fibrosis at just 11 months old, Somer has grown into a powerful and compassionate advocate for the CF community.

Guided by her belief that “Every moment, every day is worth celebrating,” Somer brings joy and purpose into everything she does. She often reminds others that “laughter is key,” a mindset that has helped carry her, and those around her, through the challenges of life with cystic fibrosis.

Through her work, Somer is dedicated to raising awareness, educating others, and offering hope, especially to families navigating a new CF diagnosis. In 2001, she founded Love to Breathe®, a platform created to educate, spread awareness about cystic fibrosis, and share love and connection around the world.

Big on birthdays, Somer’s parents made celebration part of her story in an unforgettable way. Every year, they placed Somer’s photo on a billboard. What began as a birthday tradition became something much bigger, raising awareness about cystic fibrosis in a way that stops people in their tracks. What that billboard did for awareness will give you chills. It’s something you will never forget. You’ll have to listen to the podcast to hear the story!

Somer knows that fighting CF isn’t something anyone can do alone. Her journey is deeply rooted in the strength of her support system and the community that stands beside her. She continues to advocate not only for her own future, but for a cure, for everyone living with cystic fibrosis.

Somer sums up the reason to advocate. This quote is on her website: “The goal isn’t to live forever, but to create something that will”-Chuck Palahniuk

Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
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Dr. Elizabeth Ames and Dr. Caleb Bupp are deeply committed to their patients. But like so many clinicians today, they’re spending an extraordinary amount of time battling insurance companies instead of practicing medicine.

Between prior authorizations, step therapy requirements, and outright coverage denials, physicians and their teams are buried in paperwork, often at the direct expense of patient care. Time that should be spent listening, diagnosing, and treating is instead consumed by forms, phone calls, and appeals.

Boston Globe reporter Jonathan Saltzman raised the concern and Dr. Ames brought it to my attention. The reporter talks about, a new program rolled out by Blue Cross Blue Shield of Massachusetts. The insurer says the initiative is designed to control rising healthcare costs for its 3 million members, noting that costs have increased by 30 percent since 2021. But, the program specifically targets physicians who bill for the most expensive visits. The reason for the increased expense, which is discussed in our podcast, is because doctors are choosing to spend more time with rare disease patients who have complicated health issues. They need to spend more time with complex medical needs patients than say, someone with a sore throat.

Drs. Ames and Bupp warn that this approach fundamentally misunderstands patient care, particularly for those with complex or rare conditions. “These patients don’t need less time; they need more” says Dr. Ames. Physicians argue that policies like this risk rushed appointments, strained doctor/patient relationships, and poorer outcomes. Nowhere is this more concerning than in the rare disease community, where delays and denials can be devastating.

Dr. Elizabeth Ames and Dr. Caleb Bupp talk about what this looks like in real life. As pediatric geneticists, they see firsthand how insurance barriers impact families already navigating diagnostic odysseys, uncertainty, and fear. Their work sits at the intersection of cutting-edge science and deeply human stories, and insurance interference often disrupts both. Dr. Ames, “Usually we get faxes saying, this has been denied and we start working on it. But the family gets a letter that the drug they need, the process is delayed by a “no”. We try and have good communication and say, “hey, we got this denial,” we’re working on it. But I think it’s deaths by a thousand cuts for the family. Families take the denial as, “I’m not worth of coverage, and that’s really hard”. Dr. Bupp says they have had to hire genetic counselors, a job that didn’t exist even 5 years ago, “We have a job description in our organization for it now because of the complexities that come with trying to unravel these insurance situations”.

We should also note that Dr. Ames, Dr. Bupp, and I all serve on the Rare Disease Advisory Council (RDAC) in Michigan. “I think rare disease advocacy, there is power in numbers. One person can be a huge difference maker, but it’s not one plus one equals two. It really exponentially grows, and I think with things like rare disease advisory councils, that gives you a better connection within your state, for state government and for advocacy. And I also think, or I hope, that it gives a place for an individual to plug in and that can then magnify and amplify. their voice so that they’re not alone”. Many states have RDAC’s, You can see if your state has an RDAC. For more on the Michigan RDAC

In this article and in the podcast we are not speaking on behalf of the council, but it’s important to understand why bodies like RDAC exist in the first place. Michigan is home to approximately one million people living with rare diseases, and the RDAC was created to ensure their voices, and experiences help shape policy. RDAC meetings are open to the public, and anyone in Michigan can participate and offer public comment. We hope you join our meetings via zoom (sometimes hybrid).

This conversation isn’t just about insurance policies. It’s about time, trust, and whether our healthcare system truly serves patients, especially those with the most complex needs. Speak up, share your story. Advocate. Make a difference, Mold the future, for future generations.

To look at the Everylife Diagnosis Odyssey https://everylifefoundation.org/delayed-diagnosis-study/ discussed in the podcast. Everylife impact of diagnosis: https://everylifefoundation.org/burden-study/

Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
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Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:
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Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page
Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

Innovating Medicine: How Science, Collaboration, and Curiosity Transform Patient Care

It is always inspiring to speak with true innovators on this podcast, the people who don’t just follow the science, but actively push it forward, turning ideas into real-world solutions that change lives. We are honored to welcome Dr. Jeffry Weers whose work has profoundly impacted the cystic fibrosis (CF) community and beyond.

Dr. Weers is a distinguished pharmaceutical scientist with more than 35 years of experience designing and developing novel drug-delivery systems. Throughout his career, he has focused on innovative treatments for CF, working across formulations, biologics, small molecules, and combination products. His achievements include an extensive patent portfolio and a remarkable publication record, but what truly sets him apart is his ability to translate ideas into treatments that improve patient lives. I found that many scientists like Dr. Weers are soft spoken. They don’t want to brag about their scientific successes, they just want their work to speak for itself. Dr. Weers is so darn smart! He won’t toot his own horn, so I must! He’s a great person who is filled with so much hope for the future.

One of Dr. Weers’ most notable contributions is the invention of the Tobi Podhaler, a device that transformed how inhaled antibiotics reach the lungs. For people living with CF, this innovation has meant more effective, easier-to-administer treatment, significantly improving daily quality of life. His work exemplifies the power of scientific innovation to directly impact patient care.

Dr. Weers delves into both the breakthroughs and the challenges of drug development. He shares insights into the ongoing hurdles of developing inhaled medications, including inhaled insulin, and emphasizes the regulatory obstacles that can slow the introduction of new anti-infectives. Yet, he remains optimistic about the future, highlighting the role of collaboration among scientists and the potential of AI to enhance medical imaging, diagnosis, and patient outcomes.

Dr. Weers also stresses the critical importance of addressing infectious diseases in CF patients and the responsibility of the scientific community to advocate for better treatments. Beyond his professional achievements, he reflects on the personal side of being a lifelong scientist, sharing how interests like farming provide balance and perspective in a demanding career.

I particularly loved recording this episode because Dr. Weers has a rare ability to make complex science accessible, explaining the “why” behind innovations in a way anyone can understand. For anyone curious about the intersection of science, medicine, and human impact, this conversation is both enlightening and inspiring.

To watch a fabulous video that explains the creation of what it takes to get medicine into the lungs, view here: You Tube link: https://www.youtube.com/watch?v=fwglM8Zo4m0

Inhaled drug delivery in CF/ YouTube link: https://youtu.be/iV27VdieQbo

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Please consider making a donation: https://thebonnellfoundation.org/donate/
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Daelyn James, is someone who understands the power of owning your story. Diagnosed with cystic fibrosis at just four years old, she remembers what it felt like to go from a carefree childhood to one filled with treatments, doctor visits, and a reality she wasn’t ready to face. For a long time, Daelyn kept her CF hidden because she was worried it would change how people saw her or limit what she could do.

But in high school, everything shifted. Daelyn made the brave decision to stop running from her diagnosis and start embracing it as part of who she is. And that choice changed her life.

Now 25, she proudly lives with CF and uses her experiences to raise awareness, connect with others, and offer hope. Her message is simple but powerful: even in the hardest moments, there is strength, there is goodness, and there is always a way forward.

I’m so excited for you to hear her story.

To connect with Daelyn visit her on IG: https://www.instagram.com/daelyn_j/
To connect with Somer Love her IG is Love to Breath: https://www.instagram.com/lovetobreathe/

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

Thanks to our sponsors:
Vertex: https://www.vrtx.com
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