Living With Cystic Fibrosis

From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole Dunn When our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn’t fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, and everything has changed. In this episode, Laura...

CFRI’s Executive Director, Siri Vaeth is sunshine to me. She’s a dear friend. We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor.  Siri is truly among the smartest people I know.  She is an advocate for her daughter Tess, who has CF,  and is an incredible advocate for the CF community.  If you need legislation explained to yo...

I love that I was able to bump into Aaron Trumm via an email.  He reached out to check in about our scholarship program for college.  We only award grants to undergrad students, but I was intrigued by all I learned about him. Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he’s going to l...

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious.  In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob s...

Michael Armstrong is a 25-year-old pre-law student. He loves to read, paint, play card games and video games. He was diagnosed with CF as an infant. We’re going to talk about his CF journey and how life took a turn when he was being evaluated for a lung transplant in 2023 and 2024.   Michael was featured in the 2025 Portraits of cystic fibrosis calendar and our first or second  calendar he was fea...

If you lose a child to CF, what does that do to parents? To their identity? And their place in the CF community.  These are hard discussions to have, but for a couple years now Peggy Hawkins has want to share her story on this podcast. Peggy talks about the toll waiting for a transplant takes on a family.  One of the issues was that one of them always had to work, in this case it was her husband,...

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United....

I have known Becky Penuel for many years. Becky used to run Miles for cystic fibrosis and then merged her nonprofit with Brian Callanan’s nonprofit, CF Life Fitness. After the merger, the nonprofit name is now: BreatheStrong. Becky is the Executive Director and was not able to join us today but, her Director of Operations is with us . Shawna Gray is the director of Operations and Programs, and we...

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better.  They have an excellent newsletter too.  Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each ot...

I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world. From scientists, to pharma, to other nonprofit execs like me. I was thrilled to meet Jenifer Waldrop. She joined the Black Women’s Health Imperative as the Executive Director of the Rare Disease Diversity Coalition (RDDC) in October 2022.  The organization address chall...

Melissa Yeager, Executive Director and Co-Founder of Claire’s Place Foundation Since the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie.  With many years’ experience in project management and event planning, she has the drive and the experience needed to get...

Emily Schaller , 42, is a heroine with one goal in mind, to Rock CF. A lot of laughs on this podcast with my friend Emily!  She talks about her health, the Foundation, new and old legislation and what's coming up in 2025! Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise fu...

“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks "Only 29 percent of the people who should be helped by 340B, are helped." If, like me, you have not heard about Charity Care or Dollar For , I am glad you're here!  This podcast will tell you about both Charity Care and the nonprofit, Dollar For.  I learned about the program during a webinar by Patients Rising. You'll learn m...

Are titles important? As a rare disease parent, we think you're worthy of a Ph. D.  Listen to our fun conversation about all things rare and the much needed title we may need (or not) to get things done. As a reminder, Beth Vanstone is the mother of two daughters, one who has CF. Madi is 23 years old.  Beth is a huge advocate in Canada, and much of the progress made in the rare disease space is th...

What is a Private Patient Advocate? Do you need one? Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey.  She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life.  She focuses on people diagnosed with can...

Dylan Mortimer did the NYC Marathon. If you know him, you know that he had two double lung transplants. One in 2017 and one two years later in 2019. His second transplant was in NYC and Dylan talks about what it was like to go back to the streets he could barely walk, pre-transplant. It so touching as Dylan chairs his story with us. I appreciate all the ways Dylan continues to inspire our CF Commu...

Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand.  They both work for the Partnership to Improve Patient Care, or PIPC (a coalition). Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director.  Sara, an attorney, joined...

Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently.  Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance.  Heather has so much CF Mom wisdom. I am glad to call her a friend.  In 2019 Heather became a member o...

We’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell. Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking th...

I always tell this group of undergrad students that they are our future, and that makes the future look bright.  Atef Choudhury and Naim Mashni are incredible people and students. They're both Seniors at Lyman Briggs College -- majoring in Human Biology. They're minor is in business and they're on the pre- med track. Atef and Naim are the co-founders and Co-Presidents of Cure Found MSU .  Atef's c...

From news reporting,  to CF and beyond.  Laura talks about her journey.  The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off,  and now look at it!  We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Education Scholarships. Our programs have also grown,...

We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988 . Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her Grandmother, her legal guardian raised Sorcha an...

In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Association (COTA). Rick Lofgren has been the non profits p...

Diane Shader Smith’s daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter’s diary, "Salt in My Soul" .  This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons. Diane Shader Smith  is now releasing a second book on behalf of her daughter, "Diary of a dying Girl"....

Children’s Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It’s not a Medicaid program. Access to the program has nothing to do with your household income.   The program has a lot of benefits. CSHCS covers transportation that can include airfare and/or lodging for conferences relate3d to your c...