(248) 520-2329
Select Page

Podcasts


Podcasts are here! Listen to the Living With Cystic Fibrosis podcast on iTunes, Spotify, Google Play, or your favorite podcast source.

Healthwell again open to CF patients

This is our third podcast with Alan Klein, the Chief Development Officer at Healthwell. As a reminder, Healthwell was paying about $25 million each year for CF co-pays in therapeutics. But because of the lack of funding from their corporate sponsors they stopped helping existing patients and couldn’t help new applicants with their CF bills. Healthwell closed their CF Treatment Fund to new and re-enrolling patients in 2023 with no word or idea when they would start up again. There was a lot of fear when this happened in August of 2023. The CF Vitamin and Supplement Fund did remain open, but there was also concern it may shut down. With 40 to 45 percent of the CF population being helped by Healthwell, this was scary for many. The Bonnell Foundataion was referring people to Healthwell if we couldn’t meet patients’ financial requests. It was concerning for nonprofits like mine and many others who worried we could be overwhelmed with financial requests because Healthwell no longer had funding.

The reason for this podcast is because the program has opened up, however, not everyone knows it’s back open to people with CF.

To find out more about the Healthwell Foundation: https://www.healthwellfoundation.org

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

The extraordinary, Nick Kelly.

(Please consider subscribing to our podcast and rating it. It helps us with promotion. Thank you)

What a treat for all of us today. Nicholas Kelly is in the house. I’ve wanted him on our podcast for a while. Nick was diagnosed with CF when he was 3 months old. Nick has so many accomplishments. He earned a bachelor’s and master’s degree from Bowling Green State University. Nick is a dietitian. But that is not all, he is an author, dancer, and a speaker. Once you start watching his videos you won’t be able to stop. Trust is something you must start from within, to trust externally. First trust yourself.

Nicholas has done Ted X talks…Healing through the Human Experience. He also does motivational videos where he talks about fearing the truth. Everything Nicholas talks about is not CF, it’s about life. Did CF play a part in his internal strength, lets find out….

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Karen McEwan and Laura bond over chronic illness

Karen McEwan’s daughter, Elana, is 20 years old. It’s been a complex journey from birth to today. Elana suffers from a rare, incurable disease called Primary Ciliary Dyskinesia (PCD). This is the first podcast that is not about cystic fibrosis specifically, although you will see the connection. It’s about chronic illness and Mom’s connecting and parents doing all they can for their children. We go through the same anxiety, fear, frustrations, you name it, we can relate.

Karen also has a younger daughter, Madison who does not have a rare disease. Karen is a strong person sharing her story, and the challenging journey she’s been on with her daughter.

How did we meet? My brother’s wife, Lisa connected us. We were both advocating and Lisa Teicher thought we would enjoy hanging out. We met in a Starbucks the first time and didn’t stop talking. Moms who have kids with a chronic illness have so much in common. We bonded over chronic illness.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Two Salty Okes, Rena Barrow’s story

Rena Barrow has two kids with CF, Jarrod is 22 and Jahsir is 3 years old. Over the years she’s witnessed a discrepancy in care for people of color. Even after her 22 year old son was diagnosed, doctors weren’t sure her newborn baby had CF. They told her, “Maybe it was sickle cell.” She fought until her son Jahsir was properly diagnosed. The delay in diagnosis took a toll on her little guy. When he ate he was always in pain (not prescribed enzymes until diagnosis) so now he has an aversion to food. Rena is motivated by her personal and avoidable situation to raise awareness so others don’t go through what she did.
Their experience with diagnosis of CF is sadly still too common. Between 2001 and 2005 they tried to figure out what health condition their son had. They were accused of not feeding him or caring for him properly prior to his diagnosis. Rena is speaking out for black, indigenous and people of color or BIOPIC.

To get in contact with Rena: twosaltyokes@gmail.com

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Dr. Susanna McColley talks health equity

I am excited that all of you will get to meet Dr. Susanna McColley!!!! I was so impressed with her commitment to CF and her incredible medical and life knowledge. Dr. McColley works to promote equitable diagnosis and treatment in cystic fibrosis. As a white person, Dr. McColley talks about all that white privilege brings, and what we must remember along the way. “Privilege allows you to go through the world without additional scrutiny”. She goes on to say, people who differ, who are not white, are still treated differently. Dr. McColley discusses this in today’s podcast.

Dr. McColley’s biography:
Susanna A. McColley, MD, FAAP, ATSF is a pediatric pulmonologist whose research focuses on improving the health of people with cystic fibrosis though understanding health disparities, improving methods for screening and diagnosis, and testing new treatments. She leads a multidisciplinary team of clinicians, community members and public health professionals to improving timeliness and equity of CF newborn screening. She is passionate about supporting the next generation of researchers, especially those underrepresented in the biomedical research workforce. She directs a summer research program for students from minority-serving institutions in Chicago and co-leads the Faculty Development Core for Northwestern University Recruitment to Transform Under-Representation and achieve Equity (NURTURE), the Northwestern University Faculty Institutional Recruitment for Sustaining Transformation program through the NIH Common Fund.
Dr. McColley is Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago; Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine; Associate Clinical Director for Child Health and Director of the TL1 Multidisciplinary Program in Child and Adolescent Health at Northwestern University Clinical and Translational Sciences Institute; and Editor-in-Chief for Pediatric Pulmonology. Her research is funded by the Cystic Fibrosis Foundation, the National Institutes of Health, the Center for Disease Control and Prevention, and The Legacy of Angels Foundation.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

CF Woman climbs Kilimanjaro (Caroline Heffernan)

Caroline Heffernan talks to CF families about all sorts of things, employment, family support, housing issues, cross infection, fertility…you name it.

Caroline talks all things CF. As someone with CF she knows what she’s talking about. She’ll even discuss End of Life with CF families. Caroline volunteers for CF Ireland. Caroline, is 53 years old, and pushes the power of exercise. She’s a cycler, she ran a marathon in 2008, did the Barcelona Ironman in 2018, and in July of this year climbed Kilimanjaro. She assisted in the Guinness World Record Attempt for the Highest Harp Concert in aid of CF Ireland. She also reminds everyone with CF to think about what your Kilimanjaro is. It could be just climbing the stairs. Don’t compare yourself to anyone. You do you.

She lives in Ireland with her husband Francis, kids Jamie and Anna and grandson Milo.

Find out more about Caroline’s trek up Kilimanjaro and the fundraising for CF Ireland: https://highestharpconcert.com/
Link to the story of Triona Priestly, and singer Ed Sheeran’s serenade to her: https://www.billboard.com/music/pop/ed-sheeran-serenade-dying-fan-7760540/
CF Ireland: https://www.cfireland.ie
Harp fundraising: https://www.justgiving.com/fundraising/highest-harp#:~:text=The%20Highest%20Harp%20Concert%20Team,19%2C340ft%20on%20Mount%20Kilimanjaro
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Queen Kwong, AKA Carre Callaway – rock and roll and CF

Carre Callaway (Queen Kwong) tours in the U.S., U.K. and wherever her music takes her. Carre ended her tour and was in Los Angeles when we talked with her on this podcast. She talks about how music was a coping mechanism for her chaotic life. When Carre was 17 years old, a chance meeting with Trent Reznor of Nine Inch Nails, turned her life around. Carre and I met after she was newly diagnosed with CF when she was 30 years old (being a white American and of Chinese descent her doctors didn’t think she could have CF), and amid a messy divorce with Wes Borland of Limp Bizkit. She talks about being abandoned by her husband and friends after the diagnosis. This is her first in-depth discussion about life with CF.

Carre talks about how she went into survival mode and being in what felt like a hopeless situation. Carre embraced being an imperfect human and figured out how to thrive inspired by her massive loss.

Carre has released three records, and is in the process of writing a book about life with CF. Life with CF as a punk rock, Indie rock singer with hemoptysis (coughing up blood) happening in between or during gigs.

Carre is in a loving relationship and doing well. Check her out on Instagram!

Follow Queen Kwong: https://www.instagram.com/queenkwong/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Dr. John Schuen, life at the Grand Rapids CF clinic

Please consider subscribing, rating and commenting on our podcast (Spotify). But you can hear our podcasts anywhere.

Dr. John Schuen is the division Chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s hospital in Grand Rapids. He is also the director of the CF care center. We’re talking to Dr. Schuen to discuss all that they have going on for CF patients in Grand Rapids. And why he decided to become a CF doctor.

You are a specialist in so many areas, in addition to CF, in sleep medicine as well. Why did you decide to become a doctor, and specifically why did CF draw you in?

I wanted to do this podcast to highlight all the great things that you and Dr. Susan Millard are doing and Dr. Johanna Zea-Hernandez. Overall how many patients do you have in the pediatric department and what are you seeing since the latest modulator came about in 2019?

(Laura did have a cold through this podcast).

——————————–

John Schuen serves as division chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s Hospital. Schuen provides medical care of children with complex pulmonary, respiratory related problems and sleep disorders. He also serves as medical director of the pediatric sleep laboratory, center director of cystic fibrosis care center at Helen DeVos Children’s Hospital. He is board certified in pediatric pulmonology and sleep medicine.

After matriculating from Albion College, Dr. Schuen earned his medical degree from Michigan State University College of Human Medicine. He completed his residency in pediatrics at the Cleveland Clinic and fellowship in pediatric pulmonology & sleep medicine at Johns Hopkins Hospitals.

Dr. Schuen has been a member of numerous professional organizations including the American Academy of Pediatrics, the American College of Chest Physicians, the American Academy of Sleep Medicine, and the American Thoracic Society. He serves on statewide and national committees devoted to advancing lung health in children such as the Cystic Fibrosis Newborn Screen Task Force as well as the Center Committee of the Cystic Fibrosis Foundation. The CF Care Center is also a member of the Cystic Fibrosis Learning Network as well as the Therapeutic Development Network. The Helen DeVos Children’s Hospital CF Care center also collaborates with Michigan State University to create and foster new research in their new Cystic Fibrosis Translational Research Program.

The Pediatric Pulmonary section recently launched the system’s first Pediatric Pulmonary fellowship program and currently has two wonderful fellows. He chaired the Cystic Fibrosis Foundation’s Center Committee for two consecutive terms during the pandemic and is ex officio of Spectrum Health West Michigan’s Medical Group Committee of the Board. He has published multiple original journal articles, book chapters, reviews as well as delivered dozens of invited talks devoted to advancing the state of the art in child’s lung and sleep health.

Helen DeVos Children’s Hospital: https://www.spectrumhealth.org/for-health-professionals/referrals-and-consultations/pulmonary-critical-care-and-sleep-medicine/cystic-fibrosis-clinic

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Bernie Martin – CF Mum in Ireland

Bernie Martin is a Writer, Creative Consultant and, most importantly, Mother of a CF Fighter. After 15 years working as a Copywriter and Creative Director in some of Ireland’s top advertising agencies, she started her own consultancy called The Salty Pen in 2018. This move was born out of a desire to have more flexibility around caring for her little lady with CF, who she describes as her muse, her strength, her drive, her everything!

Bernie has written about the challenges facing CF families on her blog My Little Miss Salty, and she has written for The M Word and MummyPages. She has worked on a voluntary basis as a CF patient advocate in CHI Temple Street and as a campaigner during the #YesOrkambi campaign in 2016/17, with the support of Rothco, the advertising agency she worked with at the time. She has been a speaker at the Cystic Fibrosis Ireland Conference and at the new parent information day in Temple Street, as well as featuring in Humans of Dublin by Peter Varga.

Bernie and her daughter, Eva, recently collaborated with the University of Notre Dame in the 100th episode of their long running series, ‘What would you fight for?’ In this case, the fight is for new Cystic Fibrosis treatments. Bernie and her husband Dave live in Dublin, Ireland.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Newborn Screening, will you be diagnosed with CF?

Newborn Screening, do you know what it is, do you everything about it? Did you know that people of color are less likely to be diagnosed by newborn screen because in most cases, states test for common mutations, or white mutations. Newborn Screening is a public health program. This is when a dried blood spot is taken from your babies’ heel. NBS is recognized as one of the largest and most successful disease prevention and detection programs in the U.S. it began in 1962 and CF was added in 2007.

Our experts have the answers. Dr. Samya Nasr is a pediatric pulmonologist at the University of Michigan, and she is the Coordinator for the NBS since 2007. Mary Kleyn is an epidemiologist for the NBS. She has been with the Michigan Department of Community Health since 2008.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

The fate of Healthwell, what is their future?

Please consider subscribing and rating our podcast. It helps us to promote. Thank you.

This is a follow-up podcast about the Healthwell Foundation. Thanks again to Alan Klein, the Chief Development Officer for answering all of our questions and being transparent.

They help 90 different disease groups with funding (whatever is not covered by insurance). The Bonnell Foundation will refer people to Healthwell when the financial need is greater than we can give, or because we don’t cover a certain request for funds. Approximately 40 to 45 percent of the CF community is helped by Healthwell. Healthwell used to pay about $25 million each year for CF co-pays in therapeutics but because of the lack of funding from their corporate sponsors, Healthwell had to close their CF Treatment Fund to new and re-enrolling patients. There is a lot of fear since this happened in August, but the CF Vitamin and Supplement Fund, we were told would remain open, but now that may also disappear in 2024.

This podcast answers all your questions.

Connect with Healthwell: https://www.healthwellfoundation.org
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

CF in Israel, during a war…

(Please consider subscribing and rating our podcast. It helps us to promote. Thank you.)

Israel is at war. The emotional toll on families in Israel and Palestine is unimaginable.

43 year old Nirit Maizel is trying to live her life as best she can while her country fights against Hamas. She has cystic fibrosis, it’s harder now to get medications and live any sort of a normal life. Nirit lives in Ramat Hasharon (10 minutes from Tel Aviv) with her husband Aviad and their three children. Noya is almost 14 years old, their sons Yahav is 11 years old and Segey is 7.5 years old.

Nirit takes us on her daily journey of running to the safe room with her family when sirens blast, to her hesitation to leave her house. She gives us a very day to day look at what life is like during a war. Nirit told me that she held it together during this interview so that she could describe all that is happening around them, but she said it is very hard to hold it together, but she must. There is no time to process she says, you just keep going.

We reached out to families in Palestine/Gaza but have not heard back. It could be due to the lack of electricity and inability to charge phones and computers. We are told it is almost impossible to do CF treatments there due to the lack of basic needs. The CF population in Israel is about 650 people. We are praying for everyone.

To donate to the CF community in Israel: https://www.jgive.com/new/en/cad/charity-organizations/2463
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Rory Tallon, Dating someone who also has CF.

51 year old Rory Tallon works with Cystic Fibrosis Ireland as a CF Patient Advocate as part of CFI’s member service team. Rory has CF and was recently featured in our Living with cystic fibrosis podcast volunteering for CF Ireland. In this podcast he’s talking about dating someone with CF. It happens more than people may know and he tells us why as he explains his relationship with former girlfriend, Jean, and losing her to the disease. Rory is married to Sarah and they have two daughters.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Dr. Jennifer Taylor Cousar – our CF super hero doctor

Dr. Jennifer Taylor-Cousar is an amazing woman I can’t wait to meet in person one day. She is a Board Certified Pediatric and adult pulmonologist at National Jewish Health in Colorado. She’s a rock star in the world of CF, and she’s doing incredible work raising awareness about systemic and individual bias and racism in medicine. She also talks about the importance of representation in the field of medicine. I hope after you hear this podcast you are more inspired to speak up and do more to change the world.

About Dr. Taylor-Cousar:
Dr. Taylor-Cousar is a tenured professor of adult and pediatric pulmonary medicine at National Jewish Health (NJHhttps://www.nationaljewish.org/home), where she serves as the Medical Director of Clinical Research Services, President of the Medical Staff, and is co-director of the Adult Cystic Fibrosis (CF) Program and Director of the CF Therapeutics Development Network (TDN) center. She received her undergraduate degree in human biology from Stanford University, and completed her doctorate in medicine, combined residency in internal medicine and pediatrics, and her combined fellowship in adult and pediatric pulmonary medicine at Duke University. She obtained her Master of Clinical Science from the University of Colorado.

Dr. Taylor-Cousar’s expertise is clinical trial design and conduct; she has been national/global primary investigator on multiple CF TDN trials. Her investigator-initiated research focuses on the development and evaluation of novel therapies for the treatment of CF, and on sexual and reproductive health in people with CF. Additionally, she serves on a number of national scientific advisory committees for the Cystic Fibrosis Foundation, American Thoracic Society and the National Institutes of Health. She is an Associate Editor for the Journal of Cystic Fibrosis and a member of the International Advisory Board for the Lancet Respiratory Medicine.

Dr. Taylor-Cousar is an elected member of the American Society for Clinical Investigation (ASCI). Her recent awards include the American Thoracic Society’s Distinguished Achievement Award (2023,) the American Thoracic Society William J. Martin II Public Advisory Round Table Distinguished Achievement Award (2022), the Emily’s Entourage CF Trailblazer Award (2022) and the Cystic Fibrosis Research Incorporated CF Champion Award (2021).

Michele and Terry Wright screening tool: https://noaacf.org/the-wright-cystic-fibrosis-screening-tool/

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Entrepreneur Emily Lyons success in the midst of tragedy

Emily Lyons is not yet 40 years old (she’s 37 years old) and is a multimillionaire. But her life has not been easy. Her story is incredible, she’s actually writing a book about it. She dropped out of high school at 16 years old, worked as a nanny for a bit in Australia, modeled and now, well, she’s a multimillionaire running four companies. She was recently featured in Forbes magazine for her Femme Fatale staffing and marketing business. She will tell us about all four of her companies. She talks about grief, losing her sister to CF, her Mom to cancer, and the struggles her father faced as he also has cancer.

The CF population is small compared to the U.S. at over 4-thousand compared to 40-thousand here, but we’re in this together. Thanks to my Canadian producer, Beth Vanstone, we are all learning about the wonderful people with CF in Canada.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com
Thanks to Beth Vanstone (of Canada) for producing this podcast: beth@thebonnellfoundation.org

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Entrepreneur Marten DeVlieger.

Please subscribe, rate our podcast and comment. thank you.

Marten De Vlieger do you know what he did or who he is? I am excited to let you know. He is an adventure and sports athlete. He’s 41 years old with CF. Marin worked with HillRom, which is now Baxter, to make the Monarch Airway Clearance System. He worked on it for 10 years. He still works with Baxter doing social media and some public speaking. So we’re glad to have him on our podcast. He is also a spokesperson for Polaris. His energy will inspire you! Marten lives in Crowsnest Pass in Alberta, Canada with his wife Janine, 11 year old daughter Kabrina and 13 year old son Noah.

See Marten DeVlieger and his vest: https://mymonarch.com
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Rory Tallon, CF Ireland

Please consider subscribing, rating and commenting on our podcast (Spotify). But you can hear our podcasts anywhere.

We’re traveling 9 hours by plane for this podcast to the lush green grass of Dublin, Ireland. You may want to pour yourself a Guiness for this podcast if you’re listening at home. If you’re walking while listening then just picture yourself surrounded by the pubs in Dublin or out in the country with flower shops and open land. A beautiful place indeed. This is where we find Rory Tallon. He’s 51 years old with CF and he is a patient advocate for CF Irelands service team. They provide information, guidance, grants and advocacy. He joined the organization in 2016. Rory comes from a pharmaceutical and clinical management background. And he graduated with degrees in Industrial Microbiology with chemistry and Biological Sciences. Rory and wife Sarah have daughters Florence and Aine.

(We also did a part two with Rory that will air on October 23rd)

To find out more about CF Ireland: https://www.cfireland.ie
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

CF Warrior Asia Diaz. Late diagnosis. Delivers baby while suffering pneumonia.

Asia Diaz is 27 years old and has CF. As an African American woman she was one of the many people diagnosis late in her life because some physicians believe incorrectly, that CF is a genetic disease that mainly impacts the white race. For this reason Asia was diagnosis late in life. She tells her story of life long symptoms. Her late diagnosis leaves her exhausted and sick. Asia wanted to have children with her husband, Danny. Even after she was diagnosed her doctor still did not refer her to a CF clinic. So when she gave birth to her twin daughters, she was suffering from pneumonia. The twins are 10 months old today. Here is her story.

Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Life without Trikafta, Will Corcoran (and Mom, “Bean”)

Bean Corcoran, and Will Corcoran. Mother and son.

I met Bean Corcoran when we were doing a science and innovation campaign, and we became friends! I learned a little bit about her son Will, who has CF. Bean is very involved in the CF community. She is the President of the CFF Connecticut Chapter and the Bridge of Hope Communications Director volunteer. We did a podcast in the past about the Bridge of Hope and what they do, so feel free to go back and listen to that if you want to find out more. She is also a Patient Family Partner and Quality Improvement Leader on the Pediatric CF Care team at Columbia Presbyterian Hospital in New York City since 2017.

Bean is also an artist who paints endangered animals in oils and works in pottery. Bean and her husband live with their dog Rosie.

Today we’re talking about Bean and her son Will. Will cannot take the CF modulator, and we discuss what it does to you mentally and physically.

Will is 26-years old and lives in Chicago. Will was diagnosed with CF at 3 months old, received a liver transplant at age 15, and is unable to benefit from modulators due to his mutations.

Will does four breathing treatments a day, rarely has more than two weeks without antibiotics, and battles hemoptysis. Will has been seen at five different CF centers. He is also an advocate. He works on family advisory boards, speaks with younger CFers, and currently sits on the Adult Advisory Council for the CFF. Will enjoys time outside with his dog Stanley, watching Philadelphia sports, and works as a fundraiser for an environmentally focused non-profit.

I am grateful for Bean, (which is her nickname) and to her son Will for being so honest about how CF has impacted their lives.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Night of Hope Keynote speaker, Jerry Cahill

If you want to meet Jerry in person, I encourage you to attend our Night of Hope Gala on September 9th. You’ll be able to talk with Jerry about anything that is on your heart. You’ll be so inspired, like I am every single time I see him or talk with him. If you’re not able to attend, you’ll still thoroughly enjoy this podcast as Jerry opens up about his long CF journey! Sixty-six years and counting! Jerry takes us through the “CF Dark Ages” as he calls it, to the present. What a journey.

Jerry Cahill is with the Boomer Esiason Foundation. He is the Director of Team Boomer a CF advocate, public speaker, Founder of YOU CANNOT FAIL and pole vault coach.

To attend the Night of Hope Celebration, Diamonds in the Sky buy tickets here or donate: https://thebonnellfoundation.org/night-of-hope-celebration/

To follow Jerry: @jcahillYCF

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

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Durhane Wong-Reiger, expert on access in low income Countries

Dr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making healthcare a level playing field for all. As you know we have interviewed so many people on this podcast talking about the challenges in different countries to medications. In Egypt the Ministry of health doesn’t recognize the disease, CF families there don’t have the basics like liquid vitamins for their infants. In Thailand, it’s the same, in India, infants are dying before they’re even diagnosed, in Pakistan, families can’t get drugs. And on and on.

Dr. Wong-Rieger recently presented at the World Health Organization, Essential Medicines Open Forum in regard to low- and middle-income countries access, or lack of it, to drugs.

Rare Disease International has done some research about this issue that Durhane will share with us. Dr. Wong-Riegers organization has proposed to WHO for a collaboration on Essential Medicines for rare disease which ties to her collaboration on global rare disease networks.

There is an initiative the P-Q-M-D or Project for Quality Medicinal Donations that has been trying to launch on “donations to sustainability” that they are recruiting companies and donor foundations to try to support. This development of the initiative is now in Stage 2 of the feasibility work.

There are models out there for global work like the World Federation of Hemophilia and International Gaucher Foundation. There is no international CF organization so far, and we will discuss that here.

She is Chair of Rare Disease International, Chair of Asia Pacific Rare Disease International, Treasurer of United Nations Nongovernmental Organization for Rare Diseases.

Chair of Patient Advocates Constituency Committee of the International Rare Disease Research Consortium, Patient Advisor to the APEC Rare Disease Network, member of the Editorial Board of The Patient- Patient Centered Outcomes Research, member of the Global Commission to End the Diagnostic Odyssey for Rare Diseases and member of Health Technology Assessment International Patient /Citizen Involvement Interest Group.

Dr. Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of Ontario’s Rare Disease Implementation Working Group and member of Genome Canada Steering Committee for the Rare Disease Precision Health Initiative. She is a certified Health Coach. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada. She is a trainer and frequent lecturer and author of three books and many articles.

Producer: Beth Vanstone. If you’d like to be featured contact her at: beth@thebonnellfoundation.org

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

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

Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Genentech: https://www.gene.com

Viatris: https://www.viatris.com/en

Rare Disease Advisory Council (RDAC) with Rep. Jason Morgan and Dr. Stephen Rapundalo

The Rare Disease Advisory Council, (RDAC) has passed in at least 25 states so far. This is a bi-partisan effort to give voice to people and their families who are living with a rare disease. We’re talking about 7 thousand plus rare diseases, which include cystic fibrosis. The RDAC would be housed in Michigan Department of Health and Human Services.
The Bonnell Foundation, along with MichBio, National Organization of Rare Disorders, RDII and a coalition of rare disease advocates (in Michigan) have been working to get the RDAC passed for years.
A broad overview: In 2020 the RDAC began as Bill 5465, and didn’t make it very far. Then in 2021 the coalition, The Bonnell Foundation, RDII, NORD and Dr. Rapundalo of MichBio our bill sponsor, Representative Cara Clemente, attempted to get Bill 4654 passed, but it didn’t make it through the Senate Health Policy Committee due in part to some misunderstanding about the RDAC. Our thanks to Rep. Clemente for getting us started.
The bipartisan bill, 4167, got new life when Rep. Jason Morgan became the bill’s sponsor. A first time Representative, Jason Morgan has come with enthusiasm, knowledge, and his personal story of life with Becker’s Muscular Dystrophy. We’re very hopeful this bill will pass the Senate Health Policy committee in the Fall, continue to the entire Senate, and get to the Governor’s desk to be signed. The appropriation for this bill is $200,000.
RDAC will simply give us a voice. It will include 21 people who represent the insurance companies, pharma, social workers, doctors, patients, nonprofits, geneticists, nurses, and the bio industry.
We encourage you to contact your members in the Senate (on the Senate Health Policy Committee) and encourage them to pass this bill.

Contact members of the Senate Health Policy Committee: https://committees.senate.michigan.gov/details?com=HLTHP&sessionId=15
To contact Rep. Jason Morgan: jasonmorgan@house.mi.gov
To contact Dr. Stephen Rapundalo at Michbio: Stephen@michbio.org
Contact and thank Rep. Christine Morse for getting the appropriations of $200,000 for RDAC: ChristineMorse@house.mi.gov

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Rep, Jason Morgan’s bio:
State Rep. Jason Morgan is serving his first term representing the 23rd House District, which comprises Ann Arbor, the city of South Lyon, Superior Township, Salem Township, and parts of Plymouth, Northville, Lyon, and Ann Arbor Townships.
The son of a commercial fisherman and school lunch aide, Rep. Morgan was raised in Pinconning. By working part-time and thanks to state and federal student aid, Rep. Morgan worked his way through college as a first-generation college student, earning a bachelor’s degree in political science from Northern Michigan University. He later earned a master of public administration degree from the Ford School of Public Policy at the University of Michigan.
Rep. Morgan served as a Washtenaw County Commissioner, representing Burns Park and Central Ann Arbor. He was elected chair of the board in 2019 and served as the county’s first-ever LGBTQ chair. In addition to his leadership in Washtenaw County, he served as a Northern Michigan University trustee, having been appointed by Gov. Gretchen Whitmer, and is a service member of the U.S. Coast Guard Auxiliary.
Over the last 10 years, Rep. Morgan has worked in various leadership positions in the community. He worked as the constituent services director to Michigan Secretary of State Jocelyn Benson, district director to Congresswoman Debbie Dingell, special advisor to Congresswoman Haley Stevens, transition director to Congresswoman Elissa Slotkin, director of government and community relations at Washtenaw Community College, aide to Congressman John Dingell, working as the congressman’s liaison to Washtenaw County and managing education-related casework for Michigan’s 12th District, and aide to Congressman Bart Stupak and Michigan Senate Minority Leader Michael Prusi.
Rep. Morgan’s passion is serving the community, with a particular focus on addressing economic and social inequality, LGBTQ rights, access to quality public education, transportation and infrastructure, and protecting the health of our environment. He brings these passions with him to Lansing as he serves his district.

HealthWell Foundation – going out of the CF business?

Healthwell is a foundation that helps people pay bills that impact 90 different disease groups. They cover what insurance does not. The Bonnell Foundation will refer people to Healthwell when the financial need is greater than we can give, or if we don’t cover a certain request for funds.

Approximately 40 to 45 percent of the CF community is helped by Healthwell. Healthwell pays $25 million each year for CF co-pays in therapeutic drugs. This could all change. There is a lack of funding from Corporate sponsors. Healthwell sent out a letter that stated they will have to close their CF Treatment Fund to new and re-enrolling patients The CF Vitamin and Supplement Fund however will remain open.

Answering our questions is Alan Klein, with Healthwell. Mr. Klein is the Chief Development Officer. He discusses his concern over the program that has helped CF patients since 2015. The cause for concern is that there is an increased need by the CF community. Current corporate donors gave what they could, they need more. The worry is if they can’t support the CF community, the need will triple to Foundations like ours, overwhelming most smaller Foundations.

For more about Healthwell go to: https://www.healthwellfoundation.org
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Deliverer of CF Hope, Bob Emmelkamp

You will want to learn more about Bob Emmelkamp after this podcast, I promise!

I feel like Bob is everywhere and supportive of everyone.

Without a DNA connection to cystic fibrosis, Bob Emmelkamp became a lifelong CF fund-raising volunteer in 1976, when he helped put on a high school dance marathon where proceeds benefited the CFF. Since then, he has raised hundreds of thousands of dollars to advance research for a cure for CF, spreading the word and explaining the latest CF research news, and personally funds grants to the labs of some of the top CF scientists. For the past 20 years, Bob has attended the annual North American Cystic Fibrosis Science Conference. In 2017, Bob received a special invitation to attend the European Cystic Fibrosis Society’s exclusive CF Basic Science Conference in Portugal and was also asked to create and present a poster on “The Changing Nature of Interactions between Research Scientists and Patients”.

Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org

Follow Bob at these locations: delivererofhope.net
Follow Bob: cfrn.computerbob.net
And follow him here: https://www.facebook.com/groups/CFResearchNews

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Author, Melodie Ramone

Melodie Ramone and I met on Twitter, before the pandemic. Melodie was supporting all my posts and I wondered why, did she have a CF connection? She was, as it turns out, supportive of the CF community, but had no direct connection. The people with CF and their caregivers always had a place in her heart.

Now she’s written a book, Falls The Breath that has a character who has CF. A portion of the proceeds will go to The Bonnell Foundation.

First published in literary magazines at the age of twelve, Melodie Ramone is a lifelong writer from the suburbs of Chicago, Illinois. When she’s not behind the keyboard, she is involved with small animal rescue and is actively engaged in advocating for funding and research for cystic fibrosis. She is the bestselling author of After Forever Ends and currently resides in Central Illinois.

Book Reviewer K.C. Finn describes Melodie’s book this way:

Falls the Breath (available on Amazon) is a work of fiction in the paranormal adventure, fantasy, and action subgenres, and it forms the first book of The Brimfield Ghosts series. Penned by author Melodie Ramone, the work is best suited to mature readers due to some moderate adult content, violence and language. This captivating and emotionally charged tale weaves together the lives of the living and the dead. When tragedy strikes and Lorenzo is murdered, he becomes a restless poltergeist haunted by his own hazy memories. The novel takes a unique twist when quirky maid Mahoney Miller joins Lorenzo as a ghost. The two form an unexpected connection as they navigate the afterlife together. When the young Kotilla daughters can see and hear the ghosts, the boundaries between the living and the dead blur even further.

Author Melodie Ramone has crafted a highly engaging novel that explores themes of mental illness, bullying and chronic disease, making for a poignant and thought-provoking read. The characters’ determination and stubborn love, both for the living and dead, shine through as they face overwhelming odds to keep young Kevin alive. One of the features I enjoyed most about this work was the author’s talent for atmosphere, crafting gorgeous imagery and mood through vivid description. This book is a masterful blend of history, family drama, and the supernatural, leaving readers both moved and enthralled. Overall, Falls the Breath is a gripping and heartwarming story that will stay with you long after the final page, and I, for one, can’t wait for more in this engrossing series.

To follow Melodie: @melodie_ramone

Find Melodie’s book here on Amazon: https://www.amazon.com/Falls-Breath-Brimfield-Ghosts-Book-ebook/dp/B0CBYHB6LF/ref=sr_1_1?crid=2LOAY674JX559&keywords=falls+the+breath+melodie+ramone&qid=1689879708&sprefix=%2Caps%2C162&sr=8-1

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Romance and CF

Who will want to take on a person with CF? That is the question many women born with the disease think about after high school.

Megan Bauer thought about it a lot. Until she met Alec. At 26 years old the University of Michigan graduate is happily in love. But until she found her prince, she found a lot of men who couldn’t handle dating a person with CF.

Megan met Alec when she was 19 years old at the University of Michigan, and they have been together for 7 years. They are planning their June 2024 wedding. Megan works as a Customer Experience Associate at LinkedIn, and stays active in the CF community helping the Bonnell Foundation and the CF Foundation.

The Bonnell Foundation is grateful to Megan for her volunteering commitment to us, since 2019.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

The Crossing for CF: On Location (West Palm Beach, Fla.)

The CF community is a small one. It’s made up of 40,000 people with the disease in the U.S. When you add two parents to the mix that’s 80,000 parents, then there are grandparents, siblings, Aunt and Uncles, friends and you get the picture. We have a small, tight knit community.

Laura Bonnell thought it was important that the Bonnell Foundation reach out to volunteer for the Pipers Angels Crossing for CF event. It was the weekend of June 23rd, 2023. It’s so important that we support one another.

This podcast playfully shows the camaraderie and strength of our wonderful CF community.

Travis Suit, the Founder of Piper’s Angels is a sweet soul and the father of Piper who has CF. Recently Travis discovered he has CF (and his two sisters do as well). In 2017 Travis started the paddle event. Paddlers start in Bimini, Bahamas, and land on the Beach in West Palm Beach. It was an incredible event to witness.

Hats off to everyone who participated. I have so many new friends and it was great to see people in person, finally.

Thanks to Beth Vanstone (producer) who met me in West Palm Beach from the Toronto area. I could not have done it without you. We really are very funny in this wonderful podcast (and in general).

Thanks to editor Jon Gay for putting this podcast together as I recorded it in short segments on my iPhone.

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Clement and Travis – a love story about caregiving

This is a love story about two people passionate about entertainment, writing and each other.

In 2016 Clement ‘Clem’ Souyri, moved from Versaille, France to the United States. Clem is a lawyer who specializes in entertainment law. His career path landed him in the orbit of Travis Flores. Travis is a screenwriter and children’s book author, and he has Cystic fibrosis. Travis is living because of his third double-lung transplant. Travis and Clem have been together for more than 6 years and are now facing a new challenge. Travis’ is in end stage of renal disease.

Thanks to Beth Vanstone for producing this podcast.

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

To read more about Lisa: https://www.lisabentley.com/an-unlikely-champion/

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Lisa Bentley – A Canadian powerhouse athlete

54 years ago when Canadian, Lisa Bentley was born, enzymes weren’t even in pill form. Diagnosed at age 20, Lisa was already in the midst of figuring out her life as a teacher and later, a world famous triathlete. She had 11 IRONMAN victories on several continents with at least one IRONMAN victory each year from 2000 to 2007. She is an author, coach, wife, and trainer. She talks about how mental strength and positive talk are everything, and it’s important to remember who you are and why you’re doing what you do.

She brings us so much wisdom in this podcast. She was competing in one worldwide event and she was very sick. She reminded herself that she may not win, but that she would do her best for the CF community. She took antibiotics and powered through.

You will walk away from this podcast with a plan of positivity for your life.

Thanks to Beth Vanstone for producing this podcast.

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com
To read more about Lisa: https://www.lisabentley.com/an-unlikely-champion/

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

Piper’s Angels – A Dad and daughter love story

CF in the family. ​Making it your life’s purpose. Then The Crossing for cystic fibrosis, from the Bahamas to Florida was born. Travis’ parents didn’t know they had three children with CF. When Travis’s daughter Piper was always sick, CF didn’t occur to him. Then his sister LeeAnn was diagnosed with CF at age 40. ​Then another sister. And that’s when Travis decided to have Piper tested, and then himself. His story is almost unbelievable.

​You will find his journey inspiring, and once you hear about all he is doing for the CF community, you’ll love him even more. The Crossing for Cystic Fibrosis​ raises funds for his Foundation. Paddlers travel the ocean from the Bahamas to Florida. His programs help so many. Pipers Angels Foundation supports the CF community through their Urgent Financial Assistance program. This program supports people who are in need of medically necessary and time sensitive financial assistance. And many other programs you can find in our show notes. Pipers Angels has a famous advisory Board member who believes in what they do: Jimmy Buffet.

It’s time to dive into the life of Travis Suit. You’re going to love this podcast.

Thanks to Beth Vanstone for producing this podcast.

The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

To learn more about Piper’s Angels: https://www.pipersangels.org/about

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en

The Living with Cystic Fibrosis podcast is honored to receive the 2021 MarCom Award for Marketing and Communications.

Make a Donation
Scholarships
Lung Transplants