Events
2023 SYNGAP1 Awareness Day
Join the month of June 2023 celebrating SYNGAP1 Awareness Month by donating to our clinical research at Texas Children's Hospital SYNGAP1 Center of Excellence!
We are re-starting our SYNGAP1 Gait study and need your help to fund SYNGAP1 families travel and accommodations to participate, research data analysts, equipment cost and maintenance, and clinical research staff.
SYNGAP1-related Disorders Gait Study
The SynGAP1 foundation is continuing to raise funding the first gait study for SYNGAP1-related Disorders. The seed grant of $30,000 awarded to Texas Children's Hospital supporting the pilot study on fraternal twins showing promising results for improving walking and coordination in SYNGAP1 patients as a potential measurable endpoint for future clinical trials. It's also encouraging that future studies will consider utilizing a variety of analysis methods to provide more detailed information about lower limb motion.
The publication of the Pilot Gait Study Results can be found here:
We are currently recruiting new participants for the study is an important step towards validating an endpoint or outcome measure for future clinical trials, which can ultimately lead to the development of effective treatments for SYNGAP1. It's important for the research community to continue studying this rare genetic condition and develop targeted therapies to improve the quality of life for individuals with SYNGAP1.
Our goal is to provide travel stipends for SYNGAP1 families participate in our gait study being conducted at Texas Children's Hospital in Houston, Texas. It is our hope that this research can contribute to advancing our understanding of SYNGAP1 and developing effective treatments for the condition.
If you are a SYNGAP1 family member about would like to learn more about this clinical study, please contact syngap1.research@syngap1foundation.org
SYNGAP1 Ribbon History
The Syngap1 Ribbon became the symbol of the worldwide community of this rare disease globally and launched March 21, 2017, by the SYNGAP1 Foundation. Its design and colors were created and voted on by the SYNGAP1 families who are members of SYNGAP1 Foundation International Family Connect ~ Find Your Local Tribe.
The Meaning:
Zebra is synonymous with rare disease. This is based on the quote "When you hear hooves, think of horses, not zebras," Dr. Theodore Woodward tells his medical students. “When you see symptoms, you should first look for the expected cause, rather than the exotic.”
What do the colors mean?
💚 Green: synonymous with neurological diseases. Neurological problems caused by SYNGAP1 mutations affect the nervous system. 100% of individuals with SYNGAP1-related disorders have global developmental delay or intellectual disability worldwide.
💜Purple: It's the official color of epilepsy, best known as #Purple Day worldwide. 87% of #Syngapians suffer from epilepsy.
💙Blue: It symbolizes Autism. 60% of the SYNGAP1 children are diagnosed on the autism spectrum.