Rewriting Faulty RNA

When Daniel de Boer’s son was diagnosed with…

Digeorge Syndrome and 22Q deletion – Ruari Facing Open Heart Surgery Again
My five year old son Ruari has Digeorge Syndrome or 22Q deletion. He was diagnosed when he was approximately two weeks old following… Continue Reading
The Fight to be on Top – The Physical and Mental Challenge Against Rare Disease
I get asked all the time why I am so passionate about RARE Disease.  I get asked even more why I have volunteered for the last 8 years for… Continue Reading
Peace, Love & Trevor – Amazing Grace Despite Krabbe Diagnosis
Trevor Frederic Aldrian is the perfect son! Perfectly made of God’s design, he truly represents amazing grace.  Trevor is living with… Continue Reading
Twitter: Coming Together for Rare Disease
As a mom with a child with rare disease, I can relate to the needs of other parents and caregivers about raising awareness for their… Continue Reading
Lady Gaga – Born This Way Foundation
On February 29, 2012 – Lady Gaga is launching the ‘Born This Way Foundation’ .. On February 29, 2012 – World Rare Disease Day… Continue Reading
Living Life to the Fullest with Charcot Marie Tooth (CMT)
I was working in Times Square doing the whole corporate scene and was so tired all the time. I was trying to pretend like I didn’t have… Continue Reading
“Tim’s Shoe,” A globe-trotting Nike Sneaker is Raising Awareness for Rare Disease
How anyone (even a shoe) can raise awareness for RARE Disease Liz Donohue at Sanford Research: Last week, I went back to high school with my… Continue Reading

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