Yesterday, my nephew's story went viral and news stations across America picked it up and shared it. Today, we are ready to continue to raise awareness about a very rare condition called Rhizomelic Chondrodysplasia Punctata (RCDP for short) that affects about 53 children worldwide. We are desperately seeking donors to fund research for a cure. Pharmaceutical companies aren't interested in investing in a trial for only 53 children because there is very little money in it for them. So WE, the families, the advocates, the ones who will go to the ends of the earth to do ANYTHING and EVERYTHING to help a cure to be developed, WE are doing whatever we can to link arms, raise our voices and storm the media through every avenue that we can find.
Here are a few links to news stories that were posted yesterday:
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