Jenna Heck of Davidsonville suffers from Sturge-Weber Syndrome. Jenna's mother and family have raised nearly $1 million for research on the disorder. Just this month
the Kennedy Krieger Institute in Baltimore announced that they had discovered the genetic mutation that causes both the disorder, Sturge-Weber syndrome, and the far more common port-wine birthmarks that don't harm the brain.
The researchers say this knowledge could lead to new treatments and, perhaps, one day, a cure. Dr. Anne Comi, a pediatric neurologist who has studied the disorder since the late 1990s, spoke directly to people like the Hecks in a video posted on Krieger's website.
http://www.baltimoresun.com/health/maryland-health/bs-hs-sturge-weber-20130517,0,6576705.story
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