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A Celebration

A Celebration

A new evening of celebration and fun will be at your place - February, 2017

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Late Breaking News

Late Breaking News

Abeona Therapeutics announces Data Safety Monitoring Board approves dose escalation for phase 1/2 clinical trial

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Kirby Wilson

Kirby Wilson

Brad and I formed this Foundation because of our four-year-old daughter, Kirby, the disease she was afflicted with, and our hope that Sanfilippo and its devastating progression would not manifest itself within her — our beautiful bundle of joy. The solution seemed simple. Raise funds to enable researchers to advance and expand their work to find a cure. We chose to fight this disease. Now 19...

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Purple Lemonade Stand

Purple Lemonade Stand

Along with other family foundations involved in raising funds toward the cure for Sanfilippo Syndrome, stuff we have been invited to participate in a national effort called Purple Lemonade – A Stand for Sanfilippo Syndrome. It was the vision of Grey Chapin, a six-year-old determined to fund a cure for the disorder that afflicts her older sister Blair. Please take a moment to read further to...

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Webinar: October 8

Webinar: October 8

Nationwide will be hosting a webinar October 8th from 2:00 – 3:30 EST to further explain the MPS IIIA/IIIB Natural History Study, including the rationale, aims, and plans for enrollment. This will be a 90-minute webinar with 45 minutes of slides/presentations followed by 45 minutes of questions. Further details to follow, including call-in information. Space is limited to 250 attendees. Learn...

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