Living With Cystic Fibrosis

In this podcast you'll meet my brother Noah Teicher, and my nephew Colton Teicher. I have two younger brothers, but my brother Noah (the middle child) has two boys who had a rare disease. And we talk about their journey from having a rare disease to being cured. Noah and Colton talk about their journey with the Children’s Organ Transplant Association (COTA). Rick Lofgren has been the non profits president for more than two decades. Rick helps raise millions each year to support families with the cost for transplantation. In addition to all he does, Rick is married with kids of his own.I learned about Rick, from my brother.  My nephews Colton and Caden had a rare disease called Chronic Granulomatous Disease (CGD). CGD is passed down through the mother, only to sons, not daughters. CGD causes frequent and life-threatening infections because their immune system can’t fight off certain harmful bacteria and fungi. My nephew’s mother is the carrier. Women do are only carriers of the genetic disease, only boys have

Diane Shader Smith’s daughter Mallory died from complications of cystic fibrosis 6 years ago. She was 25 years old. Diane initially published her daughter’s diary, "Salt in My Soul".  This book gave insight into how Mallory was feeling during her CF fight. Her deepest thoughts, and life lessons.Diane Shader Smith  is now releasing a second book on behalf of her daughter, "Diary of a dying Girl".  The title honestly may sound depressing, but as Diane explains, it is a wakeup call about our public health crisis and is an empowering story. Mallory's writing is so beautiful. And I can tell you, you won't be sad reading her book, you'll be inspired. In this podcast Diane explains that it's our job to raise awareness about Phage Therapy, and about the dangers of antimicrobial resistance (AMR). Something that everyone should become educated about, whether CF is your disease space, or not.You can buy Mallory's book here:  https://diaryofadyinggirl.com    All the money goes to AMR research through Mallory’s Legacy Fun

Children’s Special Health Care Services (CSHCS): Have you heard of it? In the simplest terms, it is defined by the need for specialty care required for your child. It’s not a Medicaid program. Access to the program has nothing to do with your household income.  The program has a lot of benefits. CSHCS covers transportation that can include airfare and/or lodging for conferences relate3d to your child's condition. Children Special Health Care Services has been around for almost 100 years.Danielle Pitchford, with CSHCS is explains the program to us in great detail. Pitchford is the Outreach and Engagement Analyst and oversees promoting CSHCS services and resources while engaging with providers. She also works with other professionals who work with the target population, as well as families of children with special health care needs.  To be transparent, Laura sits on the Michigan BioTrust for Health Community Values Advisory Board, which is part of MI DHHS. She also sits on a Family to Family volunteer group.  A

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 the CF community. You are missed and will never be forgotten.From his sisters Molly McBryan and Ame Austin:"After an extremely long hard fought battle with cystic fibrosis, Matt McCloskey succumbed to this terrible disease on February 7th, 2024. He was a beloved husband, son, brother, uncle, and friend to many.   He will be remembered for a lot of things; one of which was his passion for the Take A Breather foundation in which he started.The concept of Take A Breather started for Matt in 2012, when his own health battle with CF really took a turn. Knowing first hand what it is like to live with this disease, it was h

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 podcast by Mel Robbins about menopause, and then saw menopause activist Ellen Dolgen on CBS News Sunday Morning, and reached out to her.Dolgen is a best-selling author, speaker and Creator of Fearless Vagina - A Crash Course in Mastering Menopause. Her frankness in this podcast is delightful. It's All About Empowerment: My motto is: "Suffering in silence is OUT! Reaching out is IN!" Let's shatter the stigma surrounding menopause and support one another.Sign up for: https://menopausecourse.ellendolgen.comIf you want to educate your employees, colleagues, or friends about menopause, look no further: https://ellendolgen.c

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 introduced legislators, advocates and doctors to one another.  One of the best events I have attended and now I can follow Dr. Bupp and watch him change the medical world.Here are his stats: Caleb Bupp, MD, FACMG – Division Chief, Medical Genetics and Genomics.  Dr. Caleb Bupp is a pediatric trained, board-certified medical geneticist with Corewell Health Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He serves as the Division Chief of Medical Genetics and Genomics.  He is also an assistant professor at Michigan State University.  He co-discovered a treatable genetic syndrome caused by ODC1 mutations now termed

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 battle with her insurance company.  Her son’s mutation is not on the FDA approved list for Trikafta…. even though there is proof that Trikafta will work on her son's mutation.To follow Cambrey go to @cfadvocacyYou can email her: cambreywhite@gmail.com Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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 Services Program, Fetal Infant Mortality Review and the Healing Through Grieving: Pregnancy, Infant, Child Loss Program, all of the Kent County Health Department.   Brandi has over 20 years' experience in the field of Child Welfare and Human Services.  She is also a Full Spectrum Doula and as well as an Adjunct Professor with the Grand Valley State University School of Social Work.  Brandi is the mother of three children, the oldest of which has rare disease, EOE.  She enjoys reading, traveling, and spending time with her children.         To find out more about Children's Special Health Care Services program: https://www

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 and the Utkal University Gold Medal. He also got his doctorate in zoology (Molecular Endocrinology). His resume is lengthy and impressive. He was a fellow at Yale Univeristy of Medicine and worked as on the faculty there. He also worked in the Department of Physiology at Wayne State Univeristy. Dr. Jena was conferred the title of Distinguished Professor, and the George E. Palade University Professorship by the Board of Governors at Wayne State.Dr. Jena is a cell biologist and chemist. He unraveled understanding of cell secretion with his pioneering discovery of the 'porosome', the secretory machinery in cells. This sho

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 with CF who have the nonsense mutation.On Emily's team is Dr. Chandra Ghose, who is the Chief Scientific Officer. Dr. Ghose founded Bioharmony Therapeutics, an early stage biotech startup that specialized in the development of novel antimicrobials, to combat drug resistant bacterial infections.Chandra spent 8 years at the Aaron Diamond AIDS Research Center where she focused her research on developing life saving vaccines in the laboratory of Dr. David Ho.  Chandra earned her PhD from New York University School of Medicine in microbiology and her bachelors degree from Saint Louis University in biology and theology, spl

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 director of the NIH and at that time, in 1989 the pair co-discovered the gene that causes CF.The discovery of the gene that causes CF was one of the biggest contributions to science, and even though science didn’t move as fast as we wanted in 1989 when this gene was discovered, it still moved pretty fast….look where we are today with a modulator drug that corrects the underlying condition of CF, and more possibilities in the pipeline.Dr. Mitch Drumm is one of those scientific hero’s. He is currently a Professor in the Department of Genetics and Genome sciences, vice chair of translational research, director of the Research

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 and researcher some of his academic appointments include Core Faculty with Pulmonary Critical Care Fellowship and MSU, assistant professor in the pulmonary and critical care.His resume is beautifully long.  Here are some of his publications: “Acellular Normal and Fibrotic Human Lung Matrices as a Culture System for In Vitro Investigation” American Journal of Respiratory and Critical Care Medicine, Nov 1 2012, 186(9) 866-876.Adam J. Booth, Ryan Hadley, Ashley M. Cornett, Alyssa A. Dreffs, Stephanie A.Matthes, Jessica L. Tsui, Kevin Weiss, Jeffery C. Horowitz, Vincent F. Fiore, Thomas H. Barker, Bethany B. Moore, Ferna

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://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://www.viatris.com/en Please like, subscribe, and comment on our shows, wherever you get your podcasts.Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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 and a vocal ally for LGBTQ inclusivity. Rabbi Moskowitz received three Ultra-Orthodox ordinations while learning in the Mir in Jerusalem and BMG in Lakewood, NJ. He is a Wexner Field Fellow, Senior Rabbinic Fellow at the Hartman Institute, and the author of Textual Activism, Graceful Masculinity, and Seasonal Resistance. His newest book, Covenantal Allyship, will be available this year. Rabbi Moskowitz’s writings can be found at www.rabbimikemoskowitz.comWe met in person at Temple shir Shalom in West Bloomfield. Rabbi Moskowitz was speaking at the synagogue and wishing to always be an ally for the Queer community, I

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!  Gabriel is the Projects and Institutional Relations Coordinator at Unidos pela Vida - Brazilian Institute of Cystic Fibrosis Care, has worked for nonprofits for the last 8 years. He graduated in journalism and marketing.Gabriel has MBAs in Digital Marketing and Project Management and is currently a master's student in Communication Sciences at the University of Porto, Portugal. Gabriel is a patient advocate for people with cystic fibrosis and rare diseases in Brazil. He’s been doing this for the past two years….and he’s only 31 years old!To learn more about CF in Brazil visit the Unidos pela Vida website (Vernonica St

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 Peruana Cayetano Heredia in Lima, Peru, and received a Master of Public Health at Johns Hopkins Bloomberg School of Public Health. Dr. Machicado’s research focuses on epidemiology and clinical trials in pancreatic disorders. He has authored over 70 peer-reviewed articles, most of them on pancreatitis and pancreatic cysts. He has been recently selected as a FORWARD scholar by the American Gastroenterological Association, which aims to support physician scientists and future leaders in GI from under-represented populations. The Bonnell Foundation gave Dr. Machicado and his team a five thousand dollar grant to help study

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 IBM she was the Engineer of the Year, she was a multi-sport athlete and MVP of her basketball team.Since then, Maureen has grown her personal brand and is an author.  Her first book, Destination Unstoppable is fabulous.  It teaches the reader how to be a successful team player.  As Maureen knows, as I have told her for years, if she could get in a room with the Detroit Lions, they would get to the Super Bowl, and win. Her next book Win like a Girl,  is where she talks about the framework needed to help coaches and parents develop powerful girls who overcome adversity and expand their comfort zone.  The book itself, a

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 program for adults 18 to 35 years old on CF modulators.Aliyah earned her master's degree in social work at the University of Pennsylvania. She also got a bachelor's degree in Fine Arts in dance at Temple University.Aliyah lives with her husband Mark and Mr. Boots (her polydactyl cat). They also have a Cavapoo dog named, Sammy. Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website: https://thebonnellfoundation.orgBonnell Foundation email: thebonnellfoundation@gmail.comThanks to our sponsors:Vertex:  https://www.vrtx.comGenentech: https://www.gene.comViatris: https://w

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 from Ecuador. Though CF affects all races and ethnicities, there’s still a common misconception among health-care providers that it is a predominantly White disease.”Vicky and her husband were devastated to learn that their son would not have access to the life-changing and life-saving drug Trikafta because he has two rare mutations. Due to small populations in rare mutations, clinical trials are often not feasible. Other countries are using in vitro data to provide access to those with rare and ultra-rare mutations while approximately 200 Canadians with CF are being left behind.This is not a new problem in Canada, the

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 to accelerate precision medicine for all populations.  This is critical to the future of our planet and population in my opinion…. but it’s clearly why they called the program: All of Us. To succeed, and to properly represent our population…science needs All of Us.Josh is an amazing human, and I am honored to feature him in this podcast. Dr. Denny has been involved since the program’s inception. He was a member of the NIH Precision Medicine Initiative Working Group of the Advisory Committee to the Director, which developed the program’s initial scientific blueprint. He then led the program’s initial prototyping project