Living With Cystic Fibrosis
Laura Bonnell
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Top 10 Living With Cystic Fibrosis Episodes
Goodpods has curated a list of the 10 best Living With Cystic Fibrosis episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to Living With Cystic Fibrosis for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite Living With Cystic Fibrosis episode by adding your comments to the episode page.
CURE FOUND MSU EXPANDS TO UM
Living With Cystic Fibrosis
10/07/24 • 39 min
I always tell this group of undergrad students that they are our future, and that makes the future look bright.
Atef Choudhury and Naim Mashni are incredible people and students. They're both Seniors at Lyman Briggs College -- majoring in Human Biology. They're minor is in business and they're on the pre- med track. Atef and Naim are the co-founders and Co-Presidents of Cure Found MSU .
Atef's connection to CF is his nephew. He was born with the disease in 2017. Watching his nephew grow up with CF, seeing him do treatments, it inspired him to become a doctor. His passion for making a difference in the CF world Brought him to creating, with Naim, Cure Found MSU. The Bonnell Foundation is very lucky because Cure Found MSU continues to raise funds for our non profit.
You’re going to meet Bhumika Kale too. She’s the University of Michigan, where she is a sophomore pursuing a major in Public Health while following the pre-medical track. As the Co-President of the University’s chapter of Cure Found, a club dedicated to raising awareness and support for Cystic Fibrosis patients.
Her journey into the medical field began in high school, where she actively participated in various pre-med clubs and volunteered in healthcare settings. This hands-on experience, along with a year of working as a medical assistant, solidified her desire to pursue a career in medicine.
To get a hold of either of these organizations reach out here:
Atef Choudhury, Cure Found MSU: [email protected]
Naim Mashni, Cure Found MSU: [email protected]
Bhumika Kale, Cure Found UM: [email protected]
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Milestones, Medicine, and the CF Community with Siri Vaeth
Living With Cystic Fibrosis
04/07/25 • 53 min
CFRI’s Executive Director, Siri Vaeth is sunshine to me. She’s a dear friend.
We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor. Siri is truly among the smartest people I know. She is an advocate for her daughter Tess, who has CF, and is an incredible advocate for the CF community. If you need legislation explained to you, Siri can help you. She can put it in a way you'd understand.
In this insightful conversation, we explore the evolving landscape of the Cystic Fibrosis (CF) community. We share personal updates and discuss key advancements in treatment, while also addressing ongoing challenges faced by patients and families. Topics include the emotional weight of age milestones for those with CF, collaborative organizational support, and critical legislative issues impacting the rare disease community. The episode also delves into the growing cancer risks in CF, the importance of regular screenings, and the difficulties patients face with insurance coverage. Emphasizing the vital role of the Cystic Fibrosis Research Institute (CFRI), they highlight its efforts in advocacy, education, and psychosocial care. The discussion calls for increased participation in clinical trials, better funding for rare disease research, and greater awareness of diversity and the implications of late CF diagnoses.
"The CF fight is far from over. From cancer risks to access to care, this conversation is everything." Siri Vaeth.
To learn more about CFRI: https://www.cfri.org
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Diary of a Dying Girl, Diane (Mallory) Shader Smith
Living With Cystic Fibrosis
07/22/24 • 27 min
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
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Special Insurance for CF families (and others) in MI
Living With Cystic Fibrosis
07/15/24 • 33 min
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. 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: [email protected]
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Remembering Matt McCloskey of Take a Breather
Living With Cystic Fibrosis
06/24/24 • 37 min
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
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: [email protected]
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
The Fearless Vagina: Ellen Dolgen
Living With Cystic Fibrosis
06/17/24 • 60 min
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.com
If you want to educate your employees, colleagues, or friends about menopause, look no further: https://ellendolgen.com/book-ellen/
Sign up for: https://ellendolgen.com/subscribe-to-ellens-news-flash/
IG: https://www.instagram.com/menopause_mondays/
FB: https://www.facebook.com/MenopauseMondays
Tik Tok: https://www.tiktok.com/@menopausemondays?
X: https://twitter.com/EllenDolgen
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Advocate, Amanda Boone
Living With Cystic Fibrosis
01/27/25 • 65 min
Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB). Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies.
Amanda Boone I would say is a rock star advocate in the CF and rare disease community. She has cystic fibrosis and lives in Colorado. She truly rose to what I consider fame in the rare community when the Prescription Drug Affordability Drug (PDAB) was introduced in her state.
We're going to talk about the PDAB and all sorts of legislation the Amanda is fighting for, and how it impacts you.
Amanda Boone is an advocate who lives with Cystic Fibrosis (CF), a chronic and fatal chronic illness. Prior to 2019 Amanda’s health was declining. Then Trikafta, a CF modulator drug was approved by the FDA. This groundbreaking drug gave Amanda her life back and kept her from needing a lung transplantation. Amanda lost many friends over the years to CF and she carries a profound sense of gratitude for every additional day she lives.
Amanda co-founded CF United, a grassroots organization that is dedicated to ensuring continued, affordable access to CF therapies. Every member is either a patient or caregiver. Prior to CF United, Amanda served on the advocacy board Dell Children's Medical Center in Austin Texas and volunteered with the CF Foundation.
When Trikafta faced affordability challenges through the Prescription Drug Affordability Board (PDAB) in Colorado, CF United emerged as strong advocates, successfully influencing decisions to maintain accessibility. CF United's advocacy goes beyond preserving access; they champion "The Independent Patient Voice." Amanda is committed to ensuring that all patients have access to the treatments they need, and that they get a seat at the table regarding decisions that affect their lives.
In addition to advocacy, Amanda finds solace in her Colorado ranch with her husband son, two dogs and two horses. Amanda copes with her disease with laughter and realism.
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Dr. Caleb Bupp, Rare Genius (in our opinion)
Living With Cystic Fibrosis
06/10/24 • 43 min
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.
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Medora Frei
Living With Cystic Fibrosis
05/01/23 • 35 min
The CF community is a small, tight knit group. There are 40-thousand patients with CF in the U.S., and double the amount of parents. many of us in the CF community know each other, or have heard of one another.
I did a podcast about CF Vests Worldwide, and todays guest, Medora Frei, reached out to Rod Spadenger to tell him how much she enjoyed the Living with CF podcasts. Medora listened to every podcast we have produced. She wrote the nicest note to me after Rod connected us. She said our podcasts have "helped her, validated her and inspired her".
So I researched her a little and thought, she has to be on this podcast! Medora was not diagnosed until she was 18 years old, and she’s only been living with the knowledge of what having CF means for 10 years. I am honored to share her story with you.
Medora says: "The “Living with Cystic Fibrosis” podcast by the Bonnell Foundation has been instrumental in my journey as a person with CF. My CF diagnosis came later in the life at age 18. Through Laura’s wonderful guests and information shared, I’ve learned so much more about CF and have been validated in my experiences with the disease. It has also helped me feel a greater sense of community and inspired me to share more about my own journey. The podcast has also shared tangible resources for those of us with CF and other chronic diseases, and I have directly been helped by a few resources and organizations they’ve shared about. I have listened to each episode of the podcast and am greatly inspired by the work The Bonnell Foundation is doing within the CF community. I would encourage everyone to help out in any way they can"!
Medora released a book that is part art book/part abbreviated memoir; it’s called “These Are My Flowers: My Story of Composting Trauma into Colorful Art.” You can check out her website or follow her on Instagram.
Instagram: @medorafrei.art
Fedora's website: www.medorafrei.com
The Bonnell Foundation website: https://thebonnellfoundation.org
Bonnell Foundation email: [email protected]
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Genentech: https://www.gene.com
Viatris: https://www.viatris.com/en
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
Bob Coughlin, CF Dad: from Congress to Science
Living With Cystic Fibrosis
03/10/25 • 45 min
CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious.
In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy and innovation in healthcare. The conversation highlights the emotional highs and lows experienced by families dealing with chronic illness and the importance of maintaining a positive outlook.
Bob aligns real estate strategies with scientific business objectives. Which is very cool if you ask me. He’s on numerous boards and is extremely involved in work, life and organizations.
___________________________
Bob Coughlin is a Managing Director at JLL and is the New England’s Life Science and Healthcare Practice Group lead. He specializes in the representation of lab, GMP manufacturing and technology space. Robert delivers creative solutions that align real estate strategies with scientific business objectives.
Experience
Robert most recently operated as the President & CEO of the Massachusetts Biotechnology Council, where his mission was to advance Massachusetts's leadership in the life sciences to grow the industry. Robert has spent his career in both the public and private sectors. Before joining MassBio, he served as the Undersecretary of Economic Development within Governor Deval Patrick’s administration, where he prioritized both healthcare and economic development issues and was a strong advocate for the life sciences industry in Massachusetts. Prior to that, he was elected as State Representative to the 11th Norfolk district for three terms. Robert has also held senior executive positions in the environmental services, capital management and venture capital industries.
Board Involvement
- Franciscan Children’s Hospital, Vice Chair, Board of Trustees
- Team Impact, Member of National Board of Directors
- MassBio, Member, Board of Directors
- BA Sciences, Member, Board of Directors
- Anagram, Member, Board of Directors
- Nuvara, Member, Board of Directors
- Cystic Fibrosis Foundation, Chair, MA/RI Board of Directors
- Schwartz Center for Compassionate Care, Lifetime Board Member
Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website:https://thebonnellfoundation.org
Email us at: [email protected]
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured
Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en
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FAQ
How many episodes does Living With Cystic Fibrosis have?
Living With Cystic Fibrosis currently has 154 episodes available.
What topics does Living With Cystic Fibrosis cover?
The podcast is about Culture, Health & Fitness, Pharma, Society & Culture, Society, Mental Health, Documentary, Self Help, Podcasts, Education, Science, Innovation and Positivity.
What is the most popular episode on Living With Cystic Fibrosis?
The episode title 'Special Insurance for CF families (and others) in MI' is the most popular.
What is the average episode length on Living With Cystic Fibrosis?
The average episode length on Living With Cystic Fibrosis is 38 minutes.
How often are episodes of Living With Cystic Fibrosis released?
Episodes of Living With Cystic Fibrosis are typically released every 7 days.
When was the first episode of Living With Cystic Fibrosis?
The first episode of Living With Cystic Fibrosis was released on Feb 1, 2019.
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