Living With Cystic Fibrosis

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: @jcahillYCFPlease consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation

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

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

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

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@thebon

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 th

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.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https:/

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

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.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

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.orgBonnell Foundation email: thebonnellfoundation@gmail.comTo read

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 almostunbelievable. ​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 theBahamas to Florida. The programs  Travis Suit and his team have organized, 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 note

In January, The American Thoracic Society (ATS) held a webinar about the challenges facing CF families in low-income countries.  Drs. Samya Nasr and Grace Paul were key participants in the webinar. Two doctors who have been featured on this podcast. This is where I first saw I Dr. Hector Gutierrez.Dr. Gutierrez is the Raymond K. Lyrene Chair, Professor, and Director of the Division of Pediatric Pulmonary and Sleep Medicine at the University of Alabama at Birmingham (UAB). Dr. Gutierrez is native to Chile, where he did medical school and pediatric residency. He did his subspecialty training at Peds Pulmonology UAB and has been at the CF Center since 2003. Dr. Gutierrez has developed a robust training program for CF teams from resource-limited regions outside the US. He is currently the Co-chair of the CF Foundation’s Global Advisory Committee.  We’re honored to have him join us today.  He has so much knowledge of CF life around world, and we're grateful that he shared his knowledge with us.Thanks to Beth Vanst

The Live Fearlessly Foundation? It’s the creation of Jacob Venditti.  Jacob is a surfer and lover of life.  He's also a social impact entrepreneur, community builder, multimedia producer, keynote speaker, and passionate advocate for the cystic fibrosis community. He also has CF. Jacob was on the transplant list, with a lung function of 15 percent, then he was given the latest CF modulator and his lung function jumped up to 50 percent. He has no need for a transplant at this time. He is proud to say he has not been hospitalized in three years.Jacob recently launched a new initiative to fill the need for pancreatic enzymes and multi-vitamins to people with CF in countries without the resources to acquire these basic CF needs. With the help of doctors 13 prescriptions have been written,  several doctors and hospitals have reached out to him, and a 6-month supply of pancreatic enzymes have made it to the hands of 3 very sick underweight patients in Tunisa. Jacob relentlessly pursues and embodies self-transformati

Laura Bonnell, the Host of the Living with cystic fibrosis podcast, does a solo podcast this time around. This is her story, life without CF, diagnosis (here comes CF ready or not) and starting a Foundation.  It turns out that her path was always aligned with cystic fibrosis, from meeting Dr. Francis Collins (former director of the NIH and one of the scientists who discovered the gene that causes CF).From news reporter to CF advocate.The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en

The CF Legal Information Hotline. A brilliant idea.  The woman who made it happen is 57 year old Beth Sufian, who has CF.Attorney Beth Sufian works just about around the clock helping and answering questions from people in the CF community. On the CF Legal Hotline they get 900 calls - a day!  Beth has helped The Bonnell Foundation help others.  She is well known in the CF community.  We talk about the CF Social Security Project.   There is so much to learn if you're considering social security.Beth is the Director of the CF Legal Information Hotline which has been providing legal information to the CF community for 25 years.   Beth is the author of 3 books and hundreds of articles related to the legal rights of people with CF and other disabilities. To contact Beth (she says email is best): CFLegal@sufianpassamano.comOr call her at: 800-622-0385The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrt

We need to education and come up with solutions to help the people of India with cystic fibrosis.  Facts of CF in India:There are 40,000 people diagnosed with CF in the U.S. and 70,000 worldwide, but the Bonnell Foundation is certain those  numbers are low.  CF doctors in India and the U.S. believe that there could be between 35,000 and  140,000 people with CF in India (India has a population of 1.4 billion). The life expectancy in India for someone diagnosed with CF today is between 7 to 12 years old. If you live into your 20's that is considered old. Dr. Sneha Varkki says she loses a patient every month to the disease.Dr. Grace Paul works from the U.S. to help people with CF in her native land. She helped  train and continues to support Dr. Sneha Varkki. There are no CF centers, no newborn screening, no health insurance. The government doesn't recognize the disease yet. Infants are dying of malnutrition before they can even be diagnosed with CF.  The solution: education and getting all parties to work toget

It's 2023, surely now people of color are correctly being diagnosed with cystic fibrosis right?  Nope.  They are still underdiagnosed.  We hear about it happening in low income countries, but it's happening right here in the USA. Rachel Alder was diagnosed barely 5 months ago, at age 26.  She was misdiagnosed until January 2023. Rachel was born before newborn screening could detect CF. And, because not all mutations are under represented in testing, her diagnosis would still most likely have been missed. We have to change this.Rachel Alder today, or Rae as she likes to be called has been an advocate her entire life. Rachel, who is African American. It is still unbelievable to those of us advocating and raising awareness about the disparity in diagnosis in people of color, it is still happening.  As a reminder, anyone, regardless of race can be diagnosis with cystic fibrosis.  The number of people diagnosed with CF is certainly higher than is what currently reported.  Rae is a transracial adoptee, which means

The CF community is a small, tight knit group.  There are 40-thousand patients with CF in the U.S., and double the amount of parents. many of us in the CF community know each other, or have heard of one another.I did a podcast about CF Vests Worldwide, and todays guest, Medora Frei, reached out to Rod Spadenger to tell him how much she enjoyed the Living with CF podcasts.  Medora listened to every podcast we have produced. She wrote the nicest note to me after Rod connected us. She said our podcasts have "helped her, validated her and inspired her".So I researched her a little and thought, she has to be on this podcast! Medora was not diagnosed until she was 18 years old, and she’s only been living with the knowledge of what having CF means for 10 years.  I am honored to share her story with you.Medora says: "The “Living with Cystic Fibrosis” podcast by the Bonnell Foundation has been instrumental in my journey as a person with CF. My CF diagnosis came later in the life at age 18. Through Laura’s wonderful gu

People getting married who have CF. We don’t hear it happening very often.  We’ve always been told that people with CF should not be in the same room, unless they are 6 feet apart.  This is impossible to do if you have children with the disease, and of course if you marry someone with CF.Zack and Farrel both have CF, knowing the reasons why they shouldn’t marry, did not keep them apart. They met in 2014 in a Facebook Cystic Fibrosis group where Farrel was sharing a testimony of how changing her diet had helped improve her lung function and quality of life, despite losing a couple of pounds in the process. Zack, being familiar with his own journey with crossfit, had experienced similar results in increased lung function even though he too had lost a few pounds while increasing his cardiovascular exercise. They didn’t believe in the ‘eat everything you can’ in high calorie mantra that was told to all CF parents at diagnosis. The couple followed each other on social media, but it wasn’t until the following May o

Does your CF clinic offer a place for you to express your concerns and successes about CF?  The University of Michigan Medical Center started a zoom program during the pandemic that allowed its adult patients with CF to discuss what's on their mind.   The topics cover a variety of concerns people with CF face. And thanks to the need and social worker Mari Pitcher, the program is back!Mari is a licensed clinical social worker specializing in adjustment, grief work, trauma work and patient and family centered care for individuals, and their families, with chronic and life limiting illnesses. Currently a member of the University of Michigan Health Systems’ pulmonary clinics, Mari provides social work and mental health support to persons with CF and other pulmonary diseases.  Mari has over 20 years of hospice, palliative care, trauma, adjustment and grief related experience. Additionally, she has worked as a therapist supporting individuals with PTSD, histories of abuse and/or traumatic loss. Mari is an adjunct l