WE ARE LIVE!!
Bridge the Gap –The Largest-Ever Study of SYNGAP1 (MRD5)
To serve, educate and fund research for families coping with the effects of SYNGAP mutations.
OUR MISSION
SYNGAP1 is a rare non-syndromic neurological disorder that causes intellectual disability. Approximately two-thirds of individuals with SYNGAP1 mutations suffer from some type of epilepsy. In recent findings SYNGAP1 has been a gene linked to autism. The percentage is unknown of how many of these individuals have been diagnosed with autism. Several mutations in the SYNGAP1 gene were identified as the cause of intellectual disability. SYNGAP patients have the highest incidence of epilepsy (70-80%) with intellectual disability in the world.
The Whole Exome DNA and Episeek are tests that are commonly used to identify this faulty gene. As these tests become more common, we see more individuals being identified worldwide. Research is closing in on therapies that could help these individuals live better lives. Our mission is to raise awareness and continue to support researchers and doctors who are actively searching for treatments and cures.
Please help support SYNGAP1 research and give our children a chance at a better life.
Our SYNGAP BABIES!!
IN THE NEWS:
To our SYNGAP1 Heroes:
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Your “Stik-it! Ball Launcher” photos from our incredible Bridge the GAP Golf Tournament are posted. We know you’ll want to download them to your Facebook and other social media sites. Just go to http://www.stikit.golf/bridge-the-gap---22017.html and share with all your friends. (As baseball great, Satchel Paige said, “If ya done it, it ain’t braggin’!”)
Thanks so much for your support. See you next year,
Signed, The Gorgeous, Brilliant and Very Funny SYNGAP Girls
We are excited to see one of our very own SYNGAP families recognized in the Offical United States Congressional Records. Congressman Michael McCaul from the 10th District of Texas, has submitted Beckett's story to Congress to persuade them to extend the Rare Pediatric Disease Priority Review Voucher Program!! This program helps incentives to continue research for Rare Disease!
June 25 - 30, 2016 Monica Weldon, President/CEO of Bridge the Gap - SYNGAP ERF participated in the Annual DIA Conference in Philadelphia, PA. She was chosen along with 19 other patient groups that formed the Class of 2016 DIA Fellows. The primary objective was to bring collaboration between the Patient Groups, Pharmaceutical Industry and Regulatory Agencies involved in Drug Development.http://www.diaglobal.org/
Exciting News!!!
NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement
Bridge the Gap - SYNGAP Education and Research Foundation
has been selected!
We are excited to be attending April 20 -21, 2017 in Washington D.C
SYNGAP AWARENESS VIDEO
FIRST SYNGAP INTERNATIONAL CONFERENCE
November 30 - December 1, 2016
Texas Children's Hospital
Houston, Texas
Committed Conference Speakers
Dr. Gavin Rumbaugh - Scripps Research Institute, Florida
Dr. Jacques Michaud - University of Montreal
Dr. Jimmy Holder - BCM/Texas Children's
Dr. Richard Hurganir - John Hopkins Hospital USA
Dr. Eric Klann - New York University USA
Dr. Damon Page - Scripps Research Institute, Florida
Dr. Peter Penzes - Northwestern University USA
Mrs. Monica Weldon - President; Bridge the Gap - SYNGAP
Dr. Vicky Whittmore - NIH NINDS
Dr. Ben Hall - Roche Pharmacuticals
Dr. Huda Zoghbi - BCM/Texas Children's Hospital
Dr. Jeffrey Noebles - BCM/Texas Children's Hospital
Dr. Eric Morrow - Brown University
Dr. Alcino Silva - UCLA
Dr. David Wyllie - University of Edinburgh Scotland
Dr. Andrew Stanfield, University of Edinburgh Scotland
Dr. Michael Parker - The University of Sheffield
Dr. Mary Kennedy - California Institute of Technology
Dr. Ingrid Scheffer - The University of Melbourne