Living With Cystic Fibrosis

Shortly 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 concern for his health.  Thanks to Jenn, his family and to Matt for all he gave to the world and especially...

As 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.  There is so little discussion and education about women and menopause in general. I recently listened to a p...

Dr. 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 answers, until they met him! An absolute scientific rock star.  I met Dr. Bupp at a MichiBio event that introd...

Cambrey 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’ll hear, because their sons share the same mutation. Rowland received  access to a CF modulator after a...

Did 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 it. Brandi Berry, LLMSW is the Program Coordinator of the Kent County Children’s Special Health Care Serv...

A 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 Bhubaneswar, Odisha, India,  He got his masters in zoology. He received the Peasant Ku. Memorial Prize a...

Approximately 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 will help her. Her Foundation, Emily's Entourage, is a leader in research. They are focusing on people w...

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 a lab with Dr. Francis Collins, the former direct...

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 pulmonary and Critical care. He is a published author...

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 consider making a donation: https://thebonnellfoundat...

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 and radically progressive advocate for trans rights...

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, but Gabriel Johnson was born and raised there!...

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. Machicado earned his medical degree from Universidad...

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 Sterling Heights.  Years ago when she was working at...

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 her mindfulness program this year. It's for a p...

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 White”— his parents are Canadian-born Latinos fro...

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 databases in history. This would allow resources...

(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 Adviser at Cystic Fibrosis Trust. For the past six yea...

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 closed their CF Treatment Fund to new and re-enrol...

(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 Green State University. Nick is a dietitian. ...

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 parents doing all they can for their children. We...

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 in diagnosis took a toll on her little guy.  When...

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 along the way. "Privilege allows you to go thro...

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, and pushes the power of exercise. She’s a cycle...

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. Carre and I met after she was newly diagnosed...