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SYNGAP1 Foundation

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Nonprofit Overview

Causes: Brain Disorders Research, Health, Neurology & Neuroscience

Mission: SYNGAP1 Foundation, formerly (BTG) is the leading, 501(c)3 non-profit, patient advocacy organization dedicated to improving the quality of life for patients and families affected by SYNGAP1. Our priorities include raising public awareness, patient and family advocacy initiatives, educational programs, scientific research conferences, and financial support for research.

Results: In addition, The Syngap1 Foundation maintains the largest SYNGAP1 (MRD5) Online Natural History Data Registry in coordination with NORD and with grant funding provided by the FDA. The registry helps us provide the data needed to accelerate SYNGAP1 research. We have also formed strategic partnerships and collaborations with a diverse group of SYNGAP1 stakeholders to help accelerate the pace of research and maximize our impact.

Target demographics: raise awarenwess for individuals with SYNGAP mutaions

Geographic areas served: Washington DC & Houston, Texas

Programs: support, education and research programs to find treatments and a cure one day.

Community Stories

5 Stories from Volunteers, Donors & Supporters

Karen Marie A.

Client Served

Rating: 5

We have been on the journey with our special needs warrior for 19 years. Every test in the book, countless specialists, therapies and the fight to find the cause. At 17 we found SynGap. Of course I googled and fb searched and found BTG. Without hesitation my reach out was met with love, welcoming, understanding and encouragement to join in a family meet up to learn. From that day I have had a family, a community, my tribe and I know the efforts are tireless to help our kids, to fight for each one!! In 2 years I have seen the encouraging progress and every day I am thankful. It’s home.

1

Professional with expertise in this field

Rating: 5

In just a few short years, Bridge the Gap has accelerated research in SYNGAP-1, epilepsy AND autism to warp speed. Their drive and determination are exceeded only by the commitment and expertise of its founder and dedication of its board and researchers.

1

Volunteer

Rating: 5

My daughter Lizzy was i believe number 64 diagnosed worldwide with a extremely rare genetic disorder Syngap 1. I cannot put into words how fear and hopelessness crept into our life. I reached out to Monica Weldon who was at the time blogging about her sons condition Syngap1. Bridge the Gap Syngap ERF has done what would of taken decades in five years. I watched as Monica and her family changed their lives dedicating themselves to pursuing research and possible treatment for our babies. Never stopping till we get a cure for what is terminal. That is hope the foundations concern for each child and family is beautiful to witness and be a part of.

1

General Member of the Public

Rating: 5

This group has and continues to provide an excellent support group to families whose children have all been diagnosed with the same rare genetic condition. It also provides associated articles in relation to some of the conditions of Syngap1, whilst at the same time provides updates specifically related to the diagnosis.

4 Monica38

Board Member

Rating: 5

An amazing and dedicated group of people moving mountains to build bridges of hope to a cure. Fighting for better treatments for children with SYNGAP1 mutations.