Living With Cystic Fibrosis

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

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy

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

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

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Amanda Boone I would say is a rock star advocate in the CF and rare disease community.  She has cystic fibrosis and lives in Colorado.  She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda’s

I have known Becky Penuel for many years. Becky used to run Miles for cystic fibrosis and then merged her nonprofit with Brian Callanan’s nonprofit, CF Life Fitness. After the merger, the nonprofit name is now: BreatheStrong. Becky is the Executive Director and was not able to join us today but, her Director of Operations is with us .Shawna Gray is the director of Operations and Programs, and we are happy to have her. She is also the director of the Big Peach Sizzler 10K/5K Race Director.  This is BreatheStrong CF’s annual Big Peach Sizzler 10K & 5K. She has been working to support the CF community since 2022 when she joined the Miles for Cystic Fibrosis team as the Development Director. Shawna’s nonprofit engagement began in college through volunteerism and logically progressed into her professional career. Outside of work, Shawna enjoys being present for her family (husband, 2 stepchildren, and rescue dog).To find out more visit the BreatheStrong CF web site: https://breathestrongcf.org  Please like, su

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better.  They have an excellent newsletter too. Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each other for about 20 years, which seems impossible. Time does fly as they say.  Heather's husband Scott has CF.  Scott helped build  The Bonnell Foundation from the beginning as he was one of the Board of Directors.Heather brings more than 25 years’ experience working throughout the public-private, philanthropic and nonprofit sector.  She’s held executive-level positions as both Chief Administrative Officer and Executive Director and is well versed in economic and community development, education, government, social impact, and health and human services organizations. Heather oversees and supports the core branch teams wi

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

Melissa Yeager, Executive Director and Co-Founder of Claire’s Place FoundationSince the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie.  With many years’ experience in project management and event planning, she has the drive and the experience needed to get the foundation off the ground as well as the personal history of raising a child with cystic fibrosis.  Melissa is also a strong supporter of many charities and fundraising activities in her community, mostly related to causes that support families and children living with this and other rare diseases.Founding Claire’s Place Foundation has been a way for Melissa to give back and share her experience with other families living with cystic fibrosis.  “We have always been blessed with a supportive family and a wonderful group of friends.  It is my hope that we can provide the same type of support to families walking thi

Emily Schaller, 42, is a heroine with one goal in mind, to Rock CF.A lot of laughs on this podcast with my friend Emily!  She talks about her health, the Foundation, new and old legislation and what's coming up in 2025!Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life for everyone with CF. Emily created and manages an internationally acclaimed line of merchandise to help fulfill the mission of Rock CF. Today, Emily’s battle against this deadly genetic disease is printed in Runner’s World, FORBES, The Atlantic and SPIN magazines, the New York Times, The Washington Post, USA Today, NPR and posted on Competitor.com, Shape.com, the Associated Press, and various cystic fibrosis focused educational websites. She is a marathon running, super teacher and a speaker, addressing parents, patients and audiences about the effects of cystic fibrosis and the ever

“Charity Care is the best kept secret in healthcare.” says Eli Rushbanks "Only 29 percent of the people who should be helped by 340B, are helped."If, like me, you have not heard about Charity Care or Dollar For, I am glad you're here!  This podcast will tell you about both Charity Care and the nonprofit, Dollar For.  I learned about the program during a webinar by Patients Rising.You'll learn more about your rights regarding healthcare, and about the help that's out there.If you’re overwhelmed with medical bills, confused by insurance, your rights and about getting help, this podcast will be a wonderful education. Eli Rushbanks is an attorney who works at the intersection of medical debt and consumer protection. He currently is the General Counsel and Director of Policy & Advocacy at Dollar For, a patient advocacy non-profit that helps patients apply for hospital financial assistance. In that capacity he works with patients, advocacy groups, lawyers, state and federal regulators, and hospital leaders to i

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

What is a Private Patient Advocate? Do you need one?Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey.  She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life.  She focuses on people diagnosed with cancer and rare disorders. Dr. Borrelli  has worked in healthcare for over 25 years. Apart from her experiences in professional practice, she has encountered frustration and discrepancies while personally navigating the healthcare system. She has been the provider, the patient, the daughter, the sister, and the parent facing the overwhelming healthcare system; and left feeling alone and confused. Her passion is to help patients navigate the chaotic healthcare system. No one should have to do it alone. Getting a second opinion is often a good idea or enrolling in a clinical trial. Dr. Borelli research best management opti

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

Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand.  They both work for the Partnership to Improve Patient Care, or PIPC (a coalition).Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director.  Sara, an attorney, joined PIPC in 2011 and serves at the firm, Thom Run Partners.  Sara focuses policies to advance a patient centered health system, from patient engagement in research to driving outcomes that matter to patients in healthcare payment and delivery.  Sara is a healthcare and welfare policy expert with over 25 years of experience, beginning her career on Capitol Hill working for former Senator John Breaux (D-LA) from 1996-2003, and later as an attorney at the law firm Patton Boggs.  Thayer joined PIPC in 2019. Thayer works with PIPC’s diverse membership of patients, healthcare providers, researchers, and other groups to ensure t

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

We’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell.Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know American’s thinking that medically everything is better in Canada, but that’s not true. Many countries around the globe are struggling with the high cost of drugs for Rare Diseases, Canada is no exception. However, while we see industrialized countries around world looking at solutions to get rare therapies to patients quickly in an effort to maintain, improve and save lives, Canada remains stuck relying on a drug system designed to handle aspirin. Canada is the only country in the G7 without a national approach to rare diseases.In February 2023 the Federal government announced a Rare Disease Drug Strategy with a 1.4 billion budget over 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 connection to CF is his nephew. He was born with the disease in 2017. Watching his nephew grow up with CF, seeing him do treatments, it inspired him to become a doctor. His passion for making a difference in the CF world Brought him to creating, with Naim, Cure Found MSU.  The Bonnell Foundation is very lucky because Cure Found MSU continues to raise funds for our non profit.You’re going to meet Bhumika Kale too. She’s the University of Michigan, where she is a sophomore pursuing a major in Public Health while following the pre-medical track. As the Co-President of the University’s chapter of Cure Found, a club dedicate

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

We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988.Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her Grandmother, her legal guardian raised Sorcha and was her rock. Then, after her grandmother died, she struggled. Sorcha started using drugs to numb herself from the struggles of her physical and mental illnesses. This went on for about two years.Then she focused on getting healthy. Today, she relies on movement, nutrition, and self-care to stay present and optimize her quality of life. She’s passionate about raising awareness about addiction and holistic treatment of health of wellness among the chronic illness community. She is also a certified health and wellness coach. Sorcha works with an organization called, Face it Together. A nonprofit that helps others impac