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! ***
Sprint4Syngap 2024
Support SynGAP Research Fund!
Organized by Syngap Research Fund Incorporated
Phoebe's Fight
Fundraiser since Feb 2024
$27,780
145 supporters
92% of $30,000 goal
Phoebe's Fight Story
Team Members
Team Myla Tavilla
$162,835
157 Supporters
Phoebe's Fight
$27,780
145 Supporters
Team Kaia
$6,839
91 Supporters
Reef Bland
$6,610
78 Supporters
Team Kiera
$7,703
43 Supporters
Hadley Barnes
$6,555
49 Supporters
Team Louie
$6,320
41 Supporters
Team Chase
$3,005
48 Supporters
Team Naya
$2,710
40 Supporters
Theo Brazener
$4,075
24 Supporters
Team Gracyn
$1,995
29 Supporters
Andrew Ashline
$1,608
20 Supporters
Story
$100
$100
$50
$1k
$100
$25
Anonymous and 1 other
Irisa Team Chase should receive donation
11 months ago