The SynGAP Research Fund (SRF) is excited to announce that Stanford Children’s Neurology has launched the California Synaptopathy Clinic (CSC). This clinic is dedicated to providing comprehensive care to children with STXBP1 & SRID (SYNGAP1 related intellectual disability) – rare genetic diseases that affect the synapses.
SRID is a challenging disease, and it requires skilled clinicians who are capable of world-class care and curious to better understand and treat diseases. Stanford Children’s Neurology is a world-class program, and both Drs. Knowles & Lee-Messer (MD/PhDs) already care for multiple patients with SYNGAP1. They are eager to see more.
It is in the best interests of our community to have multiple patients see doctors who specialize in SRID so as to increase their understanding of our disease and likelihood that they will be able to improve care. We have seen this at other SRF partners like Boston Children’s Hospital, CHOP, NYU, Joe DiMaggio & Cook Children’s.
Anyone in California or on the West coast with a SYNGAP1 patient who can get to Stanford is encouraged to be seen at the clinic & augment their care team with this resource. The clinic is still in its early stages, but it has the potential to make a real difference in the lives of children with SRID.
To learn more about the California Synaptopathy Clinic, please visit this link for the flyer.
We hope that this new clinic will provide much-needed skilled care to children with SRID and their families. We are grateful to Stanford Children’s Neurology for their commitment to our patients.