Saturday, March 26, 2011

First conference for families affected by Chediak-Higashi Syndrome

Our Chediak-Higashi pioneers! These were the three CHS'ers at the first CHS family event - Samantha, Ethan in the middle, and Riley.

The group pic after the conference! You guys did it!

This is just a precious pic! Love it!

Riley and his big brother Brandon!



This year, for the first time, we had a separate conference programing on Sunday for families affected by Chediak-Higashi Syndrome, another rare type of albinism that is a kind of cousin disorder to Hermansky-Pudlak Syndrome. These photos are not mine. They belong to Selena, Riley's mom. I just wanted to show a few special pics (and will do so throught conference postings) to highlight the CHS gang. They all worked so hard to get to New York and it was such a special event to have three CHS families together.



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