Latest Cystic fibrosis Podcast Episodes
Remembering Matt McCloskey of Take a Breather
Living With Cystic Fibrosis - June 24, 2024 04:00 - 37 minutes ★★★★★ - 20 ratingsShortly after we did this podcast Matt died from complications of cystic fibrosis. With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about conc...
The Fearless Vagina: Ellen Dolgen
Living With Cystic Fibrosis - June 17, 2024 04:00 - 1 hour ★★★★★ - 20 ratingsAs people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause. I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. The...
Dr. Caleb Bupp, Rare Genius (in our opinion)
Living With Cystic Fibrosis - June 10, 2024 04:00 - 43 minutes ★★★★★ - 20 ratingsDr. Caleb Bupp. In my opinion. A scientific star. He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius. You will love this podcast. We talk about rare disease, his family and how he discovered and helped families who had no rare disease answer...
Cambrey Vasconez White - rare mutations
Living With Cystic Fibrosis - June 03, 2024 04:00 - 38 minutes ★★★★★ - 20 ratingsCambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar struggles. Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada. These two women connected, as you...
Brandi Berry, Chidlren's Special Health Care Services Prgrm
Living With Cystic Fibrosis - May 27, 2024 04:00 - 39 minutes ★★★★★ - 20 ratingsDid you know most states have programs for CF families, and they don’t have to do with your income? Michigan has one of the best programs in the Country. It’s called Children’s Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about i...
Dr. Bhanu Jena, another CF modulator on the horizon?
Living With Cystic Fibrosis - May 20, 2024 04:00 - 35 minutes ★★★★★ - 20 ratingsA new CF modulator could be on the horizon. Professor Dr. Bhanu Jena is exciting to tell us all about it. Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in...
The Final 10 percent
Living With Cystic Fibrosis - May 13, 2024 04:00 - 38 minutes ★★★★★ - 20 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 Drum - CF Pioneer
Living With Cystic Fibrosis - May 06, 2024 04:00 - 44 minutes ★★★★★ - 20 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 Drumm - CF Pioneer (and hero to CF community)
Living With Cystic Fibrosis - May 06, 2024 04:00 - 44 minutes ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 Novellie
Living With Cystic Fibrosis - March 18, 2024 04:00 - 30 minutes ★★★★★ - 20 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...
Mindfullness and CF with Aliyah Novelli
Living With Cystic Fibrosis - March 18, 2024 04:00 - 30 minutes ★★★★★ - 20 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...
CF Mom Vicky Maldonado talks Ultra Rare CF mutations
Living With Cystic Fibrosis - March 11, 2024 04:00 - 38 minutes ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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...
Karen McEwan and Laura bond over chronic illness
Living With Cystic Fibrosis - February 05, 2024 11:00 - 45 minutes ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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 ★★★★★ - 20 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...
Dr. John Schuen, life at the Grand Rapids CF clinic
Living With Cystic Fibrosis - November 27, 2023 05:00 - 31 minutes ★★★★★ - 20 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 ★★★★★ - 20 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...
Newborn Screening, will you be diagnosed with CF?
Living With Cystic Fibrosis - November 13, 2023 05:00 - 43 minutes ★★★★★ - 20 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 ...