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Project Alive

has now released 4 episodes of a mini-documentary series featuring Hunter Syndrome families like ours. Continue Reading

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Rare Disease

What Charlie Gard’s battle says to rare disease parents

The battle for the life of Charlie Gard ...

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Parenting

Plan your best summer day yet!

Last summer it wasn’t until the week before school started back that I realized...

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Rare Disease

When You Outlive Your Generation

I grew up in the 70's and 80's, the era of neon and Michael Jackson, pop rocks and Coke, E.T. and Stand by Me....

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Rare Disease

Letter No. 14: Dear Mothers

Dear young, innocent, typical Mothers, There was a day when I was just like you....

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