Battling Sanfilippo Syndrome Type A – Reed’s Story


In January of 2011, we learned that our then three and a half year old son Reed has Sanfilippo Syndrome Type A, a rare and fatal neurodegenerative disease. The disease is very rare, affecting about 1 in 70,000 births. To put that in perspective, according […]

In A Parents Words – Why RARE Disease Needs ULTRA and FAST Act!


Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease community needs the ULTRA Act/Fast Act of 2012. Please join Roy in viewing his two minute video!  And. . . if you feel so compelled, take action!!! ULTRA Act of 2012 […]