PRESS RELEASES FEBRUARY 27, 2022 See official news release on EurekAlert here. For #RareDiseaseDay 2022, SynGAP Research Fund (SRF) announces a partnership with Probably Genetic to find more patients — the campaign is called #CouldItBeSYNGAP1. The partners have developed a pre-screening tool to provide undiagnosed patients and families a pathway…

PRESS RELEASES FEBRUARY 22, 2022 See official news release on EurekAlert here. What if milk could be used to deliver genetic therapies to the brain of SYNGAP1 patients? The first step is to see if natural nanoparticles (“exosomes”) in milk can improve SynGAP expression! The SynGAP Research Fund (SRF) announces…

SCIENCE JANUARY 27, 2022 Aaron Harding is a scientist and director at Sharp HealthCare, member of SRF’s Board of Directors, and a SYNGAP1 dad. This article is based on information gathered through shared personal experiences in the SYNGAP1 community. Scientific information is alluded to via hyperlinks to other articles, but…

PARENT TIPS JANUARY 26, 2022 Lauren Perry is the Operations Manager at SRF and mom to two boys, including 11-year old Syngapian Will. Here, she shares valuable experience on a topic no one talks too much about, but one that many parents deal with on a daily basis. Parents look…

SRF NEWS DECEMBER 31, 2021 SRF 2021: The year in review by the numbers Listen to Mike’s latest podcast running down these numbers and view the numbers spreadsheet. ‍$1.8M committed to SYNGAP1 Research via 13 different grants to 10 institutions. 75k+ following @cureSYNGAP1 on 6 social media channels. ‍985 Patients counted in 58 countries. 154 US patients enrolled in…

SYNGAP CENSUS DECEMBER 30, 2021 How many people in the world have SYNGAP1? #SYNGAPCENSUS 2021 Update: +102 in Q4 2021

PARENT TIPS DECEMBER 16, 2021 Ray is dad to Syngapian Miles, diagnosed at age 9. Ray, wife Charlotte, and two sons live in the UK. In November 2021, inspired by other fundraising events, 9 year old Theo decided it was his turn to help his big brother. Miles, aged 12…

SCIENCE DECEMBER 10, 2021 Sandy is a volunteer with SRF and aunt to 5-year-old Syngapian Myla. Though not a scientist by trade, like many others in the “Rare Community,” she’s trying to learn as much as she can and appreciates a conference like this, which educates and informs researchers, clinicians…

PARENT TIPS NOVEMBER 30, 2021 Barbara Gaillard is a retired engineering/IT professional and is the grandmother of Syngapian Naya. This article is based on anecdotal information, casually gathered through shared personal experiences in the SYNGAP1 community. Scientific information is alluded to via hyperlinks to other articles, but their accuracy…