Latest Cystic fibrosis Podcast Episodes
The fate of Healthwell, what is their future?
Living With Cystic Fibrosis - November 06, 2023 05:00 - 27 minutes ★★★★★ - 20 ratingsPlease 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...
CF in Israel, during a war...
Living With Cystic Fibrosis - October 30, 2023 04:00 - 44 minutes ★★★★★ - 20 ratings(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. Israeli, 43 year old Nirit Maizel is trying to live her life as best she can while her country fights against Hamas...
Rory Tallon, Dating someone who also has CF.
Living With Cystic Fibrosis - October 23, 2023 04:00 - 30 minutes ★★★★★ - 20 ratings51 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. ...
Dr. Jennifer Taylor Cousar - our CF super hero doctor
Living With Cystic Fibrosis - October 16, 2023 04:00 - 36 minutes ★★★★★ - 20 ratingsPlease subscribe, comment and rate our podcast on Spotify. (You can listen on any platform). 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 sta...
Entrepreneur Emily Lyons success in the midst of tragedy
Living With Cystic Fibrosis - October 09, 2023 04:00 - 40 minutes ★★★★★ - 20 ratingsEmily 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, ...
Entrepreneur Marten DeVlieger.
Living With Cystic Fibrosis - October 02, 2023 04:00 - 44 minutes ★★★★★ - 20 ratingsPlease 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 Clearanc...
Rory Tallon, CF Ireland
Living With Cystic Fibrosis - September 25, 2023 04:00 - 48 minutes ★★★★★ - 20 ratingsPlease 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...
CF Warrior Asia Diaz. Late diagnosis. Delivers baby while suffering pneumonia.
Living With Cystic Fibrosis - September 18, 2023 04:00 - 26 minutes ★★★★★ - 20 ratingsAsia 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 ...
Life without Trikafta, Will Corcoran (and Mom, "Bean")
Living With Cystic Fibrosis - September 11, 2023 04:00 - 34 minutes ★★★★★ - 20 ratingsBean 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 Ch...
Night of Hope Keynote speaker, Jerry Cahill
Living With Cystic Fibrosis - September 05, 2023 04:00 - 32 minutes ★★★★★ - 20 ratingsIf 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 s...
Durhane Wong-Reiger, expert on access in low income Countries
Living With Cystic Fibrosis - August 28, 2023 04:00 - 50 minutes ★★★★★ - 20 ratingsDr. 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...
Rare Disease Advisory Council (RDAC) with Rep. Jason Morgan and Dr. Stephen Rapundalo
Living With Cystic Fibrosis - August 21, 2023 04:00 - 30 minutes ★★★★★ - 20 ratingsThe 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 hou...
HealthWell Foundation - going out of the CF business?
Living With Cystic Fibrosis - August 14, 2023 04:00 - 27 minutes ★★★★★ - 20 ratingsHealthwell 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. Ap...
Deliverer of CF Hope, Bob Emmelkamp
Living With Cystic Fibrosis - August 07, 2023 04:00 - 49 minutes ★★★★★ - 20 ratingsYou 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 mar...
Author, Melodie Ramone
Living With Cystic Fibrosis - July 31, 2023 04:00 - 35 minutes ★★★★★ - 20 ratingsMelodie 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 h...
Romance and CF
Living With Cystic Fibrosis - July 17, 2023 04:00 - 30 minutes ★★★★★ - 20 ratingsWho 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 ...
The Crossing for CF: On Location (West Palm Beach, Fla.)
Living With Cystic Fibrosis - July 10, 2023 04:00 - 49 minutes ★★★★★ - 20 ratingsThe 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 t...
Clement and Travis - a love story about caregiving
Living With Cystic Fibrosis - July 05, 2023 04:00 - 34 minutes ★★★★★ - 20 ratingsThis 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...
Lisa Bentley - A Canadian powerhouse athlete
Living With Cystic Fibrosis - June 26, 2023 04:00 - 40 minutes ★★★★★ - 20 ratings54 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 victor...
Piper's Angels - A Dad and daughter love story
Living With Cystic Fibrosis - June 19, 2023 04:00 - 49 minutes ★★★★★ - 20 ratingsCF 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 di...
Dr. Hector Gutierrez
Living With Cystic Fibrosis - June 12, 2023 04:00 - 41 minutes ★★★★★ - 20 ratingsIn 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 Gutierr...
Surfer Jacob Venditti Lives Fearlessly with CF
Living With Cystic Fibrosis - June 05, 2023 04:00 - 21 minutes ★★★★★ - 20 ratingsThe 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...
From diagnosis to Foundation: Laura Bonnell
Living With Cystic Fibrosis - May 29, 2023 04:00 - 40 minutes ★★★★★ - 20 ratingsLaura 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. Fr...
Attorney Beth Sufian (who has CF) talks social security
Living With Cystic Fibrosis - May 22, 2023 04:00 - 43 minutes ★★★★★ - 20 ratingsThe 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! ...
CF Realities in India
Living With Cystic Fibrosis - May 15, 2023 04:00 - 1 hour ★★★★★ - 20 ratingsWe 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. ...
Being heard: CF and diagnosis when your African American
Living With Cystic Fibrosis - May 08, 2023 04:00 - 40 minutes ★★★★★ - 20 ratingsIt'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 ...
Medora Frei
Living With Cystic Fibrosis - May 01, 2023 04:00 - 35 minutes ★★★★★ - 20 ratingsThe 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 ou...
CF Spouses: Zack and Farrel both have CF
Living With Cystic Fibrosis - March 06, 2023 05:00 - 43 minutes ★★★★★ - 20 ratingsPeople 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 ...
CF conversations held by a Michigan CF clinic!
Living With Cystic Fibrosis - February 27, 2023 05:00 - 29 minutes ★★★★★ - 20 ratingsDoes 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 peopl...
CF Bridge of Hope
Living With Cystic Fibrosis - February 20, 2023 05:00 - 39 minutes ★★★★★ - 20 ratingsImagine having children with CF and living in another country. In your country they don't have any CF medications, and maybe only a handful of people have been diagnosed with the disease. Even testing equipment is difficult to come by. Doctors in your country don't have a lot of knowledge abou...