Living With Cystic Fibrosis

Oct 27 2024 139 ep. 38 mins 1.2k
Living With Cystic Fibrosis Podcast artwork

Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire

  Society & Culture  Health & Fitness  Education
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Partnership to Improve Patient Care: legislation explained!

Oct 27 2024 43 mins  
Patient rights: do you know about the rights you have in regard to healthcare? There is a lot of information for you that Sara and Thayer serve to you here, in terms you can understand. They both work for the Partnership to Improve Patient Care, or PIPC (a coalition).Sara Traigle van Geertruyden is the Executive Director at PIPC. Thayer Roberts is the Deputy Director. Sara, an atto

Heather Trammell: CF and finding your voice

Oct 20 2024 37 mins  
Life with CF is different for everyone. We have a lot of the same challenges, but we do grow with the disease differently. Heather Trammell, CF Mom to 7 year old Charlie is married to Christopher, (for 13 years now). Heather is a legal assistant in the compliance department at Credit Acceptance. Heather has so much CF Mom wisdom. I am glad to call her a friend. In 2019 Heather beca

Touraj Manshadi falling through the gaps in health policy

Oct 13 2024 36 mins  
We’re in Canada for this podcast. Canadian Advocate Beth Vanstone has two daughters, one with CF and she’s hosting this podcast with Laura Bonnell.Beth is introducing us to 32-year-old To Touraj Dehghan Manshadi who has a CF mutation that is common to Iran, but rare in Canada where he lives. You may be surprised to learn Canada does not have a rare disease strategy. We know Ame

CURE FOUND MSU EXPANDS TO UM

Oct 06 2024 39 mins  
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

Laura Bonnell - From news reporting, to CF and beyond.

Sep 30 2024 31 mins  
From news reporting, to CF and beyond. Laura talks about her journey. The Bonnell Foundation: Living with cystic fibrosis is 14 years old. "I was so hopeful all those years ago, that my Foundation would take off, and now look at it! We have helped CF families from Michigan to California with financial assistance, lung transplant grants and Education Scholarships. Our programs have

Sorcha's CF journey: from diagnosis to addiction and discovery

Sep 22 2024 44 mins  
We discuss suicide in this podcast. This could be a trigger for some for you. Please remember the National Suicide Hotline can be reached via text or by calling 988.Sorcha Slyvester-Martin from diagnosis to drugs and discovery. When she was three days old, she was diagnosed with Cystic Fibrosis. She says she had several near-death experiences. Her Grandmother, her legal guardian ra

My brother and me! Rare, a bit of CF & COTA!

Sep 08 2024 41 mins  
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

Diary of a Dying Girl, Diane (Mallory) Shader Smith

Jul 21 2024 27 mins  
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 o

Special Insurance for CF families (and others) in MI

Jul 14 2024 33 mins  
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

Remembering Matt McCloskey of Take a Breather

Jun 23 2024 37 mins  
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 a