Living 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 CF hero. Dr. Drumm earned his doctoral degree while in…

Do 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 Rapids. He is an assistant Profession of Medicine in pulmon…

Everyone 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 all about! Please follow us on social media! Please cons…

He’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 largest LGBT synagogue. He is a deeply traditional an…

Scott and Craig return for a long overdue catch up with Gavin.By Majors_Mess_Hall

We’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 the food looks amazing there. I have never been to Brazil…

So 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 and Hepatology at the University of Michigan. Dr. Mach…

Maureen 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. They played against law enforcement at a ballpark in St…

Aliyah 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 with a CF Impact grant to get it started. Aliyah launched …

On this episode Gavin tells Tony all about his terrible experience with UK card company Moonpig, and Tony talks about his unwanted houseguest.By Majors_Mess_Hall

Canadian, 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 that Sebastian likely didn’t have CF because he’s “not…

Joining us this week is long-time friend of Gavin's, Nick Laing, to talk about his struggles with cystic fibrosis, his upcoming clothing line, and working on music with Ukdian (Gavin's band)follow Nick on Instagram @withinanickoftrikaftaBy Majors_Mess_Hall

A 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 1 million people to build one of the most diverse health …

(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 United Kingdom. Belinda Cupid is the Senior Impact Advis…

We have a very special guest this week on MMH! Screen writer, producer, director, storyboard artist, and voice of Baby Kermit on Disney +'s Muppet Babies, Matt Danner!Give Matt a follow over on X (formerly Twitter) @MattyDannerBy Majors_Mess_Hall

This 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’t help new applicatns with their CF bills. Healthwell …

(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…

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 pa…

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 i…

Stephanie and Kelly join Gavin for a much needed catch up!By Majors_Mess_Hall

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 …

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, a…

It's 2024 and we're back! Gavin sits down with a newfound friend, Tony, as they discuss how they unexpectedly crossed paths in a Walmart in Nova Scotia. Discover the incredible twist of fate that unfolded when they realized they both hailed from the same place in the UK, Liverpool!By Majors_Mess_Hall

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.…

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…

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 litt…

Well, we finally made it to 200 episodes! And to help celebrate such a huge milestone for us, we have the ever so talented and humble writer/producer/actor MR Barrie Dunn AKA Ray from the hit Canadian comedy series Trailer Park Boys joining us for a chat!We'd like to say a huge thank you to all of our supporters over the course of the last 200 epis…

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 …

Mike joins Gavin for a catch up!By Majors_Mess_Hall

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 insuran…

Scott joins Gavin again for more random chats!By Majors_Mess_Hall

(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. She has cystic fibrosis, it's harder now to get medica…

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…

Back in April of 2017, just 6 months before the passing of John Dunsworth, we were extremely fortunate to sit down and talk with the legend himself about acting, sailing, and how much he loved his family. On this episode, Gavin and Scott take a look back at that very interview.By Majors_Mess_Hall

Please 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 star in the world of CF, and she’s doing incredible work ra…

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…

Sammy is back! And she thinking Smash Mouth are a boyband... mmmmBy Majors_Mess_Hall

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 w…

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 y…

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 leav…

We are joined by the phenomenal singer Songwriter Tony Lucca!Hit Tony up on social media!website - tonylucca.comInstagram - @luccadoesTwitter/X - @luccadoesYouTube - @TonyLuccaMusic Patreon - patreon.com/tonyluccaBy Majors_Mess_Hall

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 volunt…

With a very shitty mic, Gavin chats to Stephanie and Kelly about all things Nsync, Accents and the infamous Jimmy FallonBy Majors_Mess_Hall

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 abou…

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 o…

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.…

Brian and Stephanie join Gavin for another fun and interesting chat! And Jerry Seinfeld stops by to make us all laugh..... well, in a way ;)By Majors_Mess_Hall

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…

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 h…

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 th…