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 Fund.

You can also sign up, and tell your story at the Global AMR Diary: https://www.globalamrdiary.org

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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 related 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. And, her daughters benefited from CSHCS until they moved out of state.

CSHCS website: https://www.michigan.gov/mdhhs/assistance-programs/cshcs/general-information-for-families-about-cshcs
To learn more about CSHCS, take the free https://courses.mihealth.org/PUBLIC/home.html entitled “What is Children’s Special Health Care Services.” At this same site you will find another course entitled “CSHCS-Support Parent Training Course.”
Call CSHCS Family Phone Line at 1-800-359-3722.
Send an email to: cshcsfc@michigan.gov

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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 his dream and vision to offer families living with cystic fibrosis, a temporary escape, a breather, from the everyday struggles and emotional burdens of their disease. Matt put his heart and soul into this Foundation and is truly what drove him despite his own health issues. Because of Matt, thousands of lives have been forever impacted due to his selflessness of wanting to bring joy to so many living with CF. He worked tirelessly and countless hours for the Take A Breather Foundation and the CF community. Throughout the years, we heard from many recipients/families the huge impact Matt’s mission had on their lives but we know there were countless others whom we did not hear from because he also worked quietly behind the scenes to motivate, answer questions, or just listen. There are no words to express the profound impact this loss will have on all those who knew and loved him and to the CF community.”

This was written prior to his passing:

Matt and Jen have a great story to tell. Two people with CF, living their separate lives, and then they began working together to make a difference in the lives of people with CF. Matt McCloskey was born in 1968 and grew up in Philadelphia, he has several other siblings, and one he never met because he died from CF at 2 months old.

In 2015 Matt received a lung transplant. Matt’s in his 50’s now, but his life expectancy was 6 years old. He is currently running the Take A Breather Foundation. Jen Bleecher, who is 52 years old, is the Community Outreach Volunteer for Take a Breather. Jen is married, and has a 27-year-old daughter . Jen worked as a nurse for over 20 years. Jen had a double lung transplant, she has pivoted to volunteering some of her time helping with the Community Outreach initiatives, such as building relationships within the CF and broader communities, assisting in planning of fundraising events, and overseeing Take A Breather’s School Club program.

To contact Matt and Jen: https://takeabreatherfromcf.org

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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. She offers an online course for women in all stages of menopause which I highly recommend and have signed up for.

To sign up for her programs, and read all about her: EllenDolgen.com
IG: https://www.instagram.com/menopause_mondays/
FB: https://www.facebook.com/MenopauseMondays
Linkedin: https://www.linkedin.com/in/ellendolgen/?original_referer=https%3A%2F%2Fellendolgen.com%2F
Tik Tok: https://www.tiktok.com/@menopausemondays?
X: https://twitter.com/EllenDolgen

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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 Bachmann-Bupp syndrome and is the clinical director of the International Center for Polyamine Disorders. This was recently recognized by the New York Intellectual Property Law Association as their ‘Inventor of the Year’ for his patent related to this condition. He helped create and run Project Baby Deer, a statewide initiative to provide access to rapid whole genome sequencing which resulted in Michigan Medicaid being the first to create an approval and carve-out payment policy. Dr. Bupp helped form the Rare Disease Network which provides support and education throughout Michigan.

Dr. Bupp received his Bachelor of Science in molecular biology from Grove City College in Grove City, Pennsylvania and his medical degree from the University of Toledo College of Medicine in Ohio. He completed pediatrics residency at the University of Louisville in Kentucky and his medical genetics training at the Greenwood Genetic Center in South Carolina.

Cheers to science and innovation.

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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 @cfadvocacy
You can email her: cambreywhite@gmail.com

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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 of 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.michigan.gov/mdhhs/assistance-programs/cshcs/the-family-center-for-children-and-youth-with-special-health-care-needs-family-center

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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.

His company website: https://www.porosome.com
A great porosome video, and a short one, explaining: https://www.youtube.com/watch?v=5y0Hset6gNw

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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, splitting her time between the U.S. and Spain campuses.

For more information about Emily’s Entourage: https://www.emilysentourage.org
For registry information: https://www.emilysentourage.org/cystic-fibrosis-patient-registry/
For Emily’s Entourage information: https://www.emilysentourage.org/eeupdates/
Follow EE at: @emilysentourage

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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 Institute for Children’s Health and is at the CF Clinic at Case Western Reserve University.

Because of the successes in cystic fibrosis, Dr. Drumm brought together faculty from across the Case Western Reserve University campus in 2015 to form The Research Institute for Children’s Health. This institute was launched to implement laboratory-to-clinic research programs for other rare, genetic disorders, patterned after the CF approach. Dr. Drumm currently serves as the Institute’s director, using it as infrastructure for rare disease research, but also as a platform for community outreach.

His current research in CF focuses on gene editing approaches to therapy and he has active programs to understand altered metabolism in CF, problems of CF intestines, and how genes that modify CF disease severity convey their effects.

Dr. Drumm also coordinates the Ohio Valley CF Consortium every year.

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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, Fernando J. Martinez, Laura E. Niklason, and Eric S. White

“Idiopathic Non-specific Interstitial Pneumonia”
Respirology. 2016 Feb;21(2):259-68.
Elizabeth Belloli, Rosemary Beckford, Ryan Hadley, Kevin Flaherty

“Critically Ill Patients with Interstitial Lung Disease”
Clinics in Chest Medicine. 2015Sep;36(3):497-510.
Ryan Hadley, Robert Hyzy

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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!

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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.com

We 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 went. The CF community, every community, has a queer population and that’s why I felt it was important to talk about this.

To reach Rabbi Mike Moskowitz www.cbst.org
To learn more about him and to order his books https://www.rabbimikemoskowitz.com

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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 Stasiak’s Organization and where Gabriel works). www.unidospelavida.org.br

Thank you to Beth Vanstone for producing this podcast. Beth is a CF advocate in Canada. Her daughter Madi has CF. She can be reached at: beth@thebonnellfoundation.org

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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 gut pain in people with CF. It’s a long pilot program, similar to a clinical trial. This is a feasibility study.

To get a hold of Dr. Machicado for this study: machicad@med.umich.edu

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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.

In her next book, Win like a Girl, Maureen talks about the framework needed to help coaches and parents develop powerful girls who can overcome adversity and expand their comfort zone. The book’s message is powerful and empowering for everyone, including the CF world. As parents and persons with CF, we must always advocate for ourselves and the ones we love.

Meet Maureen Monte: https://maureenmonte.com/five-fears/
Coaching example, one on one: https://www.youtube.com/watch?v=hCu4-It9JFM
Follow Maureen on social media: https://twitter.com/maureenemonte
Facebook: https://www.facebook.com/profile.php?id=100004767524903
Linkedin: https://www.linkedin.com/in/maureenmonte/

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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 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.

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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 pathway to access to new and innovative therapies is fraught with challenges. A broader regulatory approach is needed to support implementation of the National Strategy for Drugs for Rare Diseases, and cystic fibrosis is an example of this need. There are hundreds of disease-causing mutations, some with only a handful of patients worldwide. Health Canada can improve access to rare disease medications like Trikafta by using patient and laboratory in vitro data and by developing a regulatory model that permits bulk approvals of gene mutations that can respond to precision medicines like Trikafta.

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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 and the All of Us Data and Research Center. Josh was named CEO of All of Us in January 2020. Before joining NIH, Dr. Denny was a practicing physician and held several leadership positions at Vanderbilt University Medical Center. At Vanderbilt, he led discovery and implementation projects in precision medicine, including clinical pharma-co-genomics and Vanderbilt’s DNA biobank. Dr. Denny was a pioneer in the use of electronic health records for genomics studies, including the initial descriptions of phenome‐wide association studies and phenotype risk scores.

To get involved with All of Us, visit this website: https://www.joinallofus.org/

As I state in the podcast, I joined All Of Us, and gave over my genetic material and answers to medical questions.

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This is our third podcast with Alan Klein, the Chief Development Officer at 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 applicants with their CF bills. Healthwell closed their CF Treatment Fund to new and re-enrolling patients in 2023 with no word or idea when they would start up again. There was a lot of fear when this happened in August of 2023. The CF Vitamin and Supplement Fund did remain open, but there was also concern it may shut down. With 40 to 45 percent of the CF population being helped by Healthwell, this was scary for many. The Bonnell Foundataion was referring people to Healthwell if we couldn’t meet patients’ financial requests. It was concerning for nonprofits like mine and many others who worried we could be overwhelmed with financial requests because Healthwell no longer had funding.

The reason for this podcast is because the program has opened up, however, not everyone knows it’s back open to people with CF.

This article was accurate on the above date. Healthwell’s ability to fund CF grants continues to change from open and available, to closed. Please contact them directly to determine accessibility to grants. Thank you.

To find out more about the Healthwell Foundation: https://www.healthwellfoundation.org

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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. But that is not all, he is an author, dancer, and a speaker. Once you start watching his videos you won’t be able to stop. Trust is something you must start from within, to trust externally. First trust yourself.

Nicholas has done Ted X talks…Healing through the Human Experience. He also does motivational videos where he talks about fearing the truth. Everything Nicholas talks about is not CF, it’s about life. Did CF play a part in his internal strength, lets find out….

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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 go through the same anxiety, fear, frustrations, you name it, we can relate.

Karen also has a younger daughter, Madison who does not have a rare disease. Karen is a strong person sharing her story, and the challenging journey she’s been on with her daughter.

How did we meet? My brother’s wife, Lisa connected us. We were both advocating and Lisa Teicher thought we would enjoy hanging out. We met in a Starbucks the first time and didn’t stop talking. Moms who have kids with a chronic illness have so much in common. We bonded over chronic illness.

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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 he ate he was always in pain (not prescribed enzymes until diagnosis) so now he has an aversion to food. Rena is motivated by her personal and avoidable situation to raise awareness so others don’t go through what she did.
Their experience with diagnosis of CF is sadly still too common. Between 2001 and 2005 they tried to figure out what health condition their son had. They were accused of not feeding him or caring for him properly prior to his diagnosis. Rena is speaking out for black, indigenous and people of color or BIOPIC.

To get in contact with Rena: twosaltyokes@gmail.com

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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 through the world without additional scrutiny”. She goes on to say, people who differ, who are not white, are still treated differently. Dr. McColley discusses this in today’s podcast.

Dr. McColley’s biography:
Susanna A. McColley, MD, FAAP, ATSF is a pediatric pulmonologist whose research focuses on improving the health of people with cystic fibrosis though understanding health disparities, improving methods for screening and diagnosis, and testing new treatments. She leads a multidisciplinary team of clinicians, community members and public health professionals to improving timeliness and equity of CF newborn screening. She is passionate about supporting the next generation of researchers, especially those underrepresented in the biomedical research workforce. She directs a summer research program for students from minority-serving institutions in Chicago and co-leads the Faculty Development Core for Northwestern University Recruitment to Transform Under-Representation and achieve Equity (NURTURE), the Northwestern University Faculty Institutional Recruitment for Sustaining Transformation program through the NIH Common Fund.
Dr. McColley is Scientific Director for Interdisciplinary Research Partnerships at Stanley Manne Children’s Research Institute, Ann & Robert H. Lurie Children’s Hospital of Chicago; Professor of Pediatrics in Pulmonary and Sleep Medicine at Northwestern University Feinberg School of Medicine; Associate Clinical Director for Child Health and Director of the TL1 Multidisciplinary Program in Child and Adolescent Health at Northwestern University Clinical and Translational Sciences Institute; and Editor-in-Chief for Pediatric Pulmonology. Her research is funded by the Cystic Fibrosis Foundation, the National Institutes of Health, the Center for Disease Control and Prevention, and The Legacy of Angels Foundation.

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Please consider making a donation: https://thebonnellfoundation.org/donate/
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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 cycler, she ran a marathon in 2008, did the Barcelona Ironman in 2018, and in July of this year climbed Kilimanjaro. She assisted in the Guinness World Record Attempt for the Highest Harp Concert in aid of CF Ireland. She also reminds everyone with CF to think about what your Kilimanjaro is. It could be just climbing the stairs. Don’t compare yourself to anyone. You do you.

She lives in Ireland with her husband Francis, kids Jamie and Anna and grandson Milo.

Find out more about Caroline’s trek up Kilimanjaro and the fundraising for CF Ireland: https://highestharpconcert.com/
Link to the story of Triona Priestly, and singer Ed Sheeran’s serenade to her: https://www.billboard.com/music/pop/ed-sheeran-serenade-dying-fan-7760540/
CF Ireland: https://www.cfireland.ie
Harp fundraising: https://www.justgiving.com/fundraising/highest-harp#:~:text=The%20Highest%20Harp%20Concert%20Team,19%2C340ft%20on%20Mount%20Kilimanjaro
Producer: Beth Vanstone If you’d like to be featured contact her at: beth@thebonnellfoundation.org

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The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

Thanks to our sponsors:
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Viatris: https://www.viatris.com/en

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 with CF when she was 30 years old (being a white American and of Chinese descent her doctors didn’t think she could have CF), and amid a messy divorce with Wes Borland of Limp Bizkit. She talks about being abandoned by her husband and friends after the diagnosis. This is her first in-depth discussion about life with CF.

Carre talks about how she went into survival mode and being in what felt like a hopeless situation. Carre embraced being an imperfect human and figured out how to thrive inspired by her massive loss.

Carre has released three records, and is in the process of writing a book about life with CF. Life with CF as a punk rock, Indie rock singer with hemoptysis (coughing up blood) happening in between or during gigs.

Carre is in a loving relationship and doing well. Check her out on Instagram!

Follow Queen Kwong: https://www.instagram.com/queenkwong/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com

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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 going on for CF patients in Grand Rapids. And why he decided to become a CF doctor.

You are a specialist in so many areas, in addition to CF, in sleep medicine as well. Why did you decide to become a doctor, and specifically why did CF draw you in?

I wanted to do this podcast to highlight all the great things that you and Dr. Susan Millard are doing and Dr. Johanna Zea-Hernandez. Overall how many patients do you have in the pediatric department and what are you seeing since the latest modulator came about in 2019?

(Laura did have a cold through this podcast).

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John Schuen serves as division chief of Pediatric Aerodigestive Specialties at Helen DeVos Children’s Hospital. Schuen provides medical care of children with complex pulmonary, respiratory related problems and sleep disorders. He also serves as medical director of the pediatric sleep laboratory, center director of cystic fibrosis care center at Helen DeVos Children’s Hospital. He is board certified in pediatric pulmonology and sleep medicine.

After matriculating from Albion College, Dr. Schuen earned his medical degree from Michigan State University College of Human Medicine. He completed his residency in pediatrics at the Cleveland Clinic and fellowship in pediatric pulmonology & sleep medicine at Johns Hopkins Hospitals.

Dr. Schuen has been a member of numerous professional organizations including the American Academy of Pediatrics, the American College of Chest Physicians, the American Academy of Sleep Medicine, and the American Thoracic Society. He serves on statewide and national committees devoted to advancing lung health in children such as the Cystic Fibrosis Newborn Screen Task Force as well as the Center Committee of the Cystic Fibrosis Foundation. The CF Care Center is also a member of the Cystic Fibrosis Learning Network as well as the Therapeutic Development Network. The Helen DeVos Children’s Hospital CF Care center also collaborates with Michigan State University to create and foster new research in their new Cystic Fibrosis Translational Research Program.

The Pediatric Pulmonary section recently launched the system’s first Pediatric Pulmonary fellowship program and currently has two wonderful fellows. He chaired the Cystic Fibrosis Foundation’s Center Committee for two consecutive terms during the pandemic and is ex officio of Spectrum Health West Michigan’s Medical Group Committee of the Board. He has published multiple original journal articles, book chapters, reviews as well as delivered dozens of invited talks devoted to advancing the state of the art in child’s lung and sleep health.

Helen DeVos Children’s Hospital: https://www.spectrumhealth.org/for-health-professionals/referrals-and-consultations/pulmonary-critical-care-and-sleep-medicine/cystic-fibrosis-clinic

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Bonnell Foundation email: thebonnellfoundation@gmail.com

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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 little lady with CF, who she describes as her muse, her strength, her drive, her everything!

Bernie has written about the challenges facing CF families on her blog My Little Miss Salty, and she has written for The M Word and MummyPages. She has worked on a voluntary basis as a CF patient advocate in CHI Temple Street and as a campaigner during the #YesOrkambi campaign in 2016/17, with the support of Rothco, the advertising agency she worked with at the time. She has been a speaker at the Cystic Fibrosis Ireland Conference and at the new parent information day in Temple Street, as well as featuring in Humans of Dublin by Peter Varga.

Bernie and her daughter, Eva, recently collaborated with the University of Notre Dame in the 100th episode of their long running series, ‘What would you fight for?’ In this case, the fight is for new Cystic Fibrosis treatments. Bernie and her husband Dave live in Dublin, Ireland.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

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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 recognized as one of the largest and most successful disease prevention and detection programs in the U.S. it began in 1962 and CF was added in 2007.

Our experts have the answers. Dr. Samya Nasr is a pediatric pulmonologist at the University of Michigan, and she is the Coordinator for the NBS since 2007. Mary Kleyn is an epidemiologist for the NBS. She has been with the Michigan Department of Community Health since 2008.

Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: thebonnellfoundation@gmail.com

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Vertex: https://www.vrtx.com
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Viatris: https://www.viatris.com/en