According to a story from CBS News, Roxli Doss, an eleven year old girl, was diagnosed with a rare and dangerous brain tumor called diffuse intrinsic pontine glioma. It is…
Patients, caregivers, and advocates alike all know how devastating and exhausting a rare disease can be, so it's important to find the moments to celebrate when someone overcomes the odds…
Leukodystrophy is the term used for a group of rare, progressive brain disorders which cause the brain's myelin sheath (the nerves protective covering) to either develop improperly or be destroyed…
Methylmalonic Acidemia (MMA) is a liver condition which affects the body's ability to break down food and fatty acids. A dietary imbalance or minor virus for these patients may spark a metabolic…
Cedar Rapids, Iowa is rallying to help a one-year-old girl who has been diagnosed with Caravan disease, a devastating disorder that often leads to premature death, within mid-childhood. What is Canavan…
This is an interview I did with Scott Davidson who has a podcast called Living Adaptive, where he interviews people that have adapted to significantly difficult situations in their lives.…
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