Phoebe’s Fight is here, and in the 12 months since we last held this fundraiser, this little girl, and all of the patients afflicted with Syngap-1, have been fighting BIGTIME.
They fight multiple daily seizures, hypotonia and mobility disabilities; self-injurious and aggressive behaviors; sensory processing disorder; severe communication challenges; and, as a result of these symptoms, they (and their families) often fight social isolation.
She has been fighting multiple daily seizures, which have re-emerged. She has
So now it’s time for us to fight on their behalf. WE must fight for scientists and pharmaceutical companies to invest more time and resources into curing SYNGAP1. Fight to get clinical trials off the ground. Fight to get support for the families and patients who are struggling against this disease every day. We need to fight for five-year-old Phoebe and every other current and future patient so they can finally stop fighting and live.
Please join us in supporting CURESYNGAP1 for our fourth year. This year is a big one – breakthroughs are happening, clinical trials are nearly here – but we need resources and enthusiasm now more than ever.
We are hosting a FAMILY BLOCK PARTY in Brookland on Saturday, May 2 from 1-4pm. Expect music, a magician, a food truck, a raffle, face painting, and more!
As always, thank you for your support and community!!