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ABOUT US

Fundraising for Huntington's Disease Research

My name is Erin Pryce, and I have Huntington’s Disease. It’s basically the mental deterioration of Alzheimer’s combined with the physical deterioration of Parkinson’s, and it typically starts in your 30’s or 40’s. It’s genetic (a single gene), so if your parent has it, you have a 50% chance of inheriting their bad gene. My grandmother, dad, and uncle have all died from HD. I have three sisters, who have thankfully all tested negative! They all have kids who won’t inherit it. Most people decide not to get tested because you only want to know your future if it’s good. You have to pass a psych evaluation to prove you won’t hurt yourself or others if you test positive. Please click on the Updates page for stories of my testing and experience with HD. I have been fundraising for the Huntington’s Disease Society of America since 2016, and I’ve raised $28,000 for them! I was recently asked to join the board of advisors for the Johns Hopkins HD Center where the research is happening. I’m a scientist myself (at Johns Hopkins University), and the research they’re doing is amazing. We are continually accepting donations for a pilot study to potentially delay the onset of symptoms for people like me.

 

Please read the feature on the Pryce sisters from Johns Hopkins.

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CONTACT US

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