I never expected over 15,000 signatures on our Change.org petition (more…)
The battle for the life of Charlie Gard (more…)
I grew up in the 70's and 80's, the era of neon and Michael Jackson, pop rocks and Coke, E.T.…
Dear young, innocent, typical Mothers, There was a day when I was just like you. (more…)
Christmas looks different for parents of kids with rare diseases. And instead of celebration, it's often a difficult time. Visiting…
If your child has a chronic medical condition, then you've probably encountered challenges with medical trauma. Or maybe someone else…
I don't know what dang blasted cartoon is telling my son about things like high school and college, but I…
I have a confession. I've been advocating and writing about rare disease which makes total sense since Case's condition is,…
Why? That is a word that is heard often in the world of rare disease. It's a word that is…
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