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ogc1

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1 reviews

Review for cureCADASIL, Plainsboro, NJ, USA

Rating: 5 stars  

I am familiar with various aspects of the CADASIL disease and know individuals who suffer with it. But, not until I attended the Boston Conference on CADASIL this past Jun 27-29, did I get to experience the CADASIL Association in action. Friends, families and sufferers from all over the U.S. were able to come together in a relaxed setting to listen to experts in the field talk about CADASIL's history, present place in the medical arena and what lies ahead for those involved. The distinguished panelists from Harvard Univ., Brown Univ., and Massachusetts General Hospital provided valuable information and allowed copious time for questions and answers throughout the day. Break-out sessions were also organized so small groups could discuss their situations and ideas which made everyone feel "they are not in this alone." Without the devoted time and hard work of the Association's board members and volunteers, CADASIL would not have the exposure it has begun to have to the public. With this exposure, so many people have come forward with questions about their misdiagnosis or the cause for their unexplained symptoms. They need everyone's help in providing time and money to continue the fight for a cure.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Role:  General Member of the Public