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

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....

Special Insurance for CF families (and others) in MI

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...

The Fearless Vagina: Ellen Dolgen

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....

Dr. Caleb Bupp, Rare Genius (in our opinion)

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...