Wednesday, May 16, 2012

Kentucky family raises money for 2nd Chediak-Higashi Syndrome conference

Heather Alvey and her family sold crafts at the Daviess County Fish & Game Easter Celebration to support funding for the Second Chediak-Higashi Syndrome Conference. The conference will bring together families impacted by Chediak-Higashi Syndrome, as well as researchers working to find better treatments for the syndrome. 

Alvey’s two adult sons are affected by the syndrome. 

CHS is a rare type of albinism that involves low vision, immune deficiency, a bleeding disorder, and in older teens and adults, neurological complications. The syndrome is exceedingly rare. 

The Chediak-Higashi Syndrome Association currently operates as an affiliate of the Hermansky-Pudlak Syndrome Network. CHS and HPS are both syndromes that involve albinism, a bleeding disorder and other health-related complications. 

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