Latest Cft Podcast Episodes
The Final 10 percent
Living With Cystic Fibrosis - May 13, 2024 04:00 - 38 minutes ★★★★★ - 19 ratingsApproximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that ...
Dr. Mitch Drumm - CF Pioneer (and hero to CF community)
Living With Cystic Fibrosis - May 06, 2024 04:00 - 44 minutes ★★★★★ - 19 ratingsLiving legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You’ll hear the connection Laura and Mitch have, and they didn’t know it until this podcast! Dr. Drumm is a living ...
Dr. Mitch Drum - CF Pioneer
Living With Cystic Fibrosis - May 06, 2024 04:00 - 44 minutes ★★★★★ - 19 ratingsLiving legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You’ll hear the connection Laura and Mitch have, and they didn’t know it until this podcast! Dr. Drumm is a living ...
Dr Ryan Hadley - Lung Transplants
Living With Cystic Fibrosis - April 29, 2024 04:00 - 27 minutes ★★★★★ - 19 ratingsDo you know what is needed before you have a lung transplant? Or even how it works? More and more adult CF clinics are explaining the details to adult patients, but if you're a CF parent, there is a lot you may not know. We welcome Dr. Ryan Hadley. Dr. Hadley is at Corewell health in Grand R...
Laura and Beth talk about what makes a Foundation work!
Living With Cystic Fibrosis - April 22, 2024 04:00 - 40 minutes ★★★★★ - 19 ratingsEveryone always asks me "What does it take to run a Foundation?" So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation. Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is ...
Rabbi Moskowitz, embracing the Queer community
Living With Cystic Fibrosis - April 15, 2024 13:07 - 58 minutes ★★★★★ - 19 ratingsHe’s been arrested. He’s CIS gender with a wife and kids. Rabbi Mike Moskowitz is also an orthodox Jew’is and he is one of the biggest supporters of the queer community. Rabbi Moskowitz is the Scholar-in-Residence for Trans and Queer Jewish Studies at Congregation Beit Simchat Torah, the world’s...
CF in Brazil, and one outstanding advocate
Living With Cystic Fibrosis - April 08, 2024 04:00 - 57 minutes ★★★★★ - 19 ratingsWe’re going to Brazil for this podcast. Brazil is famous for some soccer players; you remember Pele and others. It’s the largest country in South America, it has 4 times zones…60 percent of the amazon rainforest is in Brazil, their flag has 27 stars on it and they speak Portuguese there. And t...
Gut pain and CF, Dr. Jorge Machicado
Living With Cystic Fibrosis - April 01, 2024 04:00 - 23 minutes ★★★★★ - 19 ratingsSo many people with cystic fibrosis have gut pain. It is often times, debilitating. Dr. Matthew DiMagno and Dr. Jorge Machicado are working to find answers to the suffering of people with CF, and others without. Dr. Machicado is a Clinical Assistant Professor in the Division of Gastroenterology...
Win Like A Girl - Maureen Electa Monte
Living With Cystic Fibrosis - March 25, 2024 04:00 - 49 minutes ★★★★★ - 19 ratingsMaureen Electa Monte and I go ... way back! When she was an engineer, and doing photography, she photographed our first Portraits of cystic fibrosis black and white calendar in 2003. The wives of the Detroit Tigers, pretty much all of them pregnant, played in our first celebrity softball game. T...
Mindfullness and CF with Aliyah Novelli
Living With Cystic Fibrosis - March 18, 2024 04:00 - 30 minutes ★★★★★ - 19 ratingsAliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she's a licensed social worker practicing as a child and family therapist at The Center for Change and Growth in Ardmore, PA. Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her w...
Mindfullness and CF with Aliyah Novellie
Living With Cystic Fibrosis - March 18, 2024 04:00 - 30 minutes ★★★★★ - 19 ratingsAliyah Novelli was diagnosed with cystic fibrosis as an infant. Today, she's paying it forward as a social worker at Jefferson Adult CF center in Philadelphia. Aliyah is full of enthusiasm about her new program: mindfulness. The CF Foundation awarded her with a CF Impact grant to get it sta...
CF Mom Vicky Maldonado talks Ultra Rare CF mutations
Living With Cystic Fibrosis - March 11, 2024 04:00 - 38 minutes ★★★★★ - 19 ratingsCanadian, Vicky Maldonado is the mother of a young boy living with a rare genetic form of CF. Sebastian is 6 years old, and a twin. The road to diagnosis was challenging. Sebastian was diagnosed with two rare CF genes after repeated respiratory infections and two hospitalizations. “We were told ...
All of Us - Science, Innovation and YOU.
Living With Cystic Fibrosis - March 04, 2024 05:00 - 39 minutes ★★★★★ - 19 ratingsA better future for health for: All of Us! Dr. Josh Denny is the All of Us Research program, CEO. A program that comes from the National Institute of Health. The Bonnell Foundation is all about Science and Innovation! And he has a CF connect via his father! The goal of All of Us is to enroll ...
CF Trust, U.K. with Belinda Cupid
Living With Cystic Fibrosis - February 26, 2024 05:00 - 40 minutes ★★★★★ - 19 ratings(Please follow us wherever you get your podcasts, rate us and/or comment. Thank you) Part of the Bonnell mission, while doing these podcasts, is to raise awareness and shine the light on other Foundations who are also doing great things. Today we’re going to tell you about the CF Trust in the ...
Healthwell again open to CF patients
Living With Cystic Fibrosis - February 19, 2024 05:00 - 19 minutes ★★★★★ - 19 ratingsThis is our third podcast with Alan Klein, the Chief Development Officer 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’...
The extraordinary, Nick Kelly.
Living With Cystic Fibrosis - February 12, 2024 05:00 - 44 minutes ★★★★★ - 19 ratings(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 accomplishme...
Sitting Down With the Biogen Whistleblower
Fraud in America - February 07, 2024 14:00 - 1 hour ★★★★★ - 18 ratingsWatch the interview with Tom Greene, Michael's whistleblower lawyer here. To learn more about The Anti-Fraud Coalition, click here. ------------------ Fraud in America is made possible by the generous donation of Getnick Law, a boutique Manhattan law firm dedicated to fighting fraud and promo...
Karen McEwan and Laura bond over chronic illness
Living With Cystic Fibrosis - February 05, 2024 11:00 - 45 minutes ★★★★★ - 19 ratingsKaren 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...
Two Salty Okes, Rena Barrow's story
Living With Cystic Fibrosis - January 29, 2024 05:00 - 40 minutes ★★★★★ - 19 ratingsRena 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 ...
Dr. Susanna McColley talks health equity
Living With Cystic Fibrosis - January 22, 2024 13:54 - 54 minutes ★★★★★ - 19 ratingsI 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 al...
CF Woman climbs Kilimanjaro (Caroline Heffernan)
Living With Cystic Fibrosis - January 15, 2024 05:00 - 44 minutes ★★★★★ - 19 ratingsCaroline 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. Caroli...
Queen Kwong, AKA Carre Callaway -rock n roll and CF
Living With Cystic Fibrosis - January 08, 2024 05:00 - 50 minutes ★★★★★ - 19 ratingsCarre 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...
What’s Happening With Whistleblower Laws in the Halls of Congress?
Fraud in America - December 06, 2023 14:00 - 30 minutes ★★★★★ - 18 ratingsTo learn more about The Anti-Fraud Coalition, click here. ------------------ Fraud in America is made possible by the generous donation of Getnick Law, a boutique Manhattan law firm dedicated to fighting fraud and promoting business integrity. ------------------ Fraud in America Social Links ...
Dr. John Schuen, life at the Grand Rapids CF clinic
Living With Cystic Fibrosis - November 27, 2023 05:00 - 31 minutes ★★★★★ - 19 ratingsPlease 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. ...
Bernie Martin - CF Mum in Ireland
Living With Cystic Fibrosis - November 20, 2023 05:00 - 40 minutes ★★★★★ - 19 ratingsBernie 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 desi...
A Look Ahead to the 2024 Legal Landscape
Fraud in America - November 15, 2023 14:00 - 25 minutes ★★★★★ - 18 ratingsTo learn more about The Anti-Fraud Coalition, click here. ------------------ Fraud in America is made possible by the generous donation of Getnick Law, a boutique Manhattan law firm dedicated to fighting fraud and promoting business integrity. ------------------ Fraud in America Social Links ...
Newborn Screening, will you be diagnosed with CF?
Living With Cystic Fibrosis - November 13, 2023 05:00 - 43 minutes ★★★★★ - 19 ratingsNewborn 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 ...
The fate of Healthwell, what is their future?
Living With Cystic Fibrosis - November 06, 2023 05:00 - 27 minutes ★★★★★ - 19 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 ★★★★★ - 19 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 ★★★★★ - 19 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. ...
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