Funding cures. Saving lives.
We are a nonprofit organization striving to provide the Hunter syndrome community with medical, advocacy, and fundraising
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WHAT IS HUNTER SYNDROME?
Hunter syndrome is a terminal genetic disorder that makes it difficult for the body to break down sugar molecules, leading to a disruption in patient cognition and development. The disease is so rare (less than 500 boys in the United States and 2,000 worldwide) that access to life extending care and research is limited.
WHY IS A CURE NEEDED?
Although enzyme replacement therapy (ERT) programs being used with many Hunter syndrome patients stabilize most of their physical symptoms, it cannot cross the blood-brain barrier (bbb) and is unable to prevent cognitive regression. Without the cure, Hunter syndrome patients will continuously decline to an infantile state until they succumb to the disease, with most children dying before their teenage years.
WHY A CLINICAL TRIAL?
Through gene therapy, a revolutionary approach to treating genetic diseases, researchers at Nationwide Children’s Hospital in Columbus, Ohio believe they discovered a cure for Hunter syndrome. Gene therapy is the most promising cure- and once funded, a clinical trial could begin as early as January 2019. Learn more here.