We Are Committed to Building Excellence
Bridge the Gap – SYNGAP Education and Research Foundation is committed to give $50, 000 per year of funds to the development of our SYNGAP1 Centers of Excellence.
Our participating Institutes offer a comprehensive set of services: Not just core services, but advanced services and supporting services specifically geared toward treating patients with SYNGAP1 Syndrome. The range of services often spans the entire continuum of care, not merely the acute care procedure.
Our SYNGAP1 Team are the most world-renowned experts on SYNGAP1 in the World.
Our participating centers have aligned their protocols to achieve the best possible outcomes for a future clinical trial and partner on research grants to help find treatments for the SYNGAP1 patient community.
Our SYNGAP1 Clinics are open to taking patients for either research evaluations or regular clinic care.
What To Expect At Your Appointment
Our clinicians are dedicated to achieving a comprehensive exam, quality care and feedback for each SYNGAP1 Patient.
The evaluation will consist of a routine physical examination, including blood pressure check, height, and weight.
Each SYNGAP1 patient will be scheduled an EEG to establish a baseline for seizure activity. These EEG’s will be used to help in understanding the prevalence and type of seizures. The goal is to use the data collected for a prospective natural history study being conducted in partnership with the participating centers of excellence.
Blood Work is optional. Blood will be collected to run specific tests being research in the lab for comparative analysis and for future studies.
The clinician will evaluate the patients current medications to determine if the treatment protocol is the best. They will then make suggestions to the current patient’s neurologist for possible changes if needed.