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Sprint4Syngap 2024

Support SynGAP Research Fund!

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$248,723

877 Supporters

99% of $250,000 goal

Phoebe's Fight

Fundraiser since Feb 2024

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$27,680

144 supporters

92% of $30,000 goal

Phoebe's Fight Story

Our Phoebe Joan. Named for a Titaness whose name means "bright" and for Joan of Arc and her grandfather John. Her name fits. We couldn't imagine a brighter light than our girl. And legend has it that Joan of Arc also had a very unique brain (jury is still out on Phoebe's grandfather ...). Last year when we decided to participate in this fundraiser, we were largely shell shocked by Phoebe's diagnosis, which had come only weeks earlier, and felt like this was something we could DO when we felt so helpless. The generosity of our family, friends, and wider community astounded us. You have continued to astound us over this past year as we have settled into our new reality of seizure monitoring, medications, constant appointments, and grieving. We truly couldn't have gotten by without you. We've realized, though, that as parents, the milestones, even if late, prompt the same joy and excitement. Phoebe took her first steps around this past Christmas - at about 31 months old. We were giddy and it was nice to have a "normal" parenting moment, as abnormal as our circumstances are. That said, we dream constantly of more normalcy for Phoebe - and for her sweet, kind, crazy smart sister by extension - and so we need gene therapies and other treatments for Syngap-1. Please join us once again in supporting the Syngap Research Fund in April, Phoebe's birthday month. She'll be three this year. It's hard not to feel that minutes count in getting her a gene therapy so she can achieve her full, bright, warrior potential. 100% of proceeds go directly to research. Thank you. Thank you. Thank you. *** For those in the DC area, we will have an inclusive and accessible playdate on April 27 at 9:00 am at the Palisades Recreation Center, 5200 Sherier Pl. NW. We will be co-hosting with Team Theo and Team Kai!  ***

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$248,723

877 Supporters

99% of $250,000 goal

Syngap Research Fund Incorporated

A 501(c)(3) Public Charity

EIN 83-1200789