Autism and Epilepsy are two of the most predominant symptoms related to a newly found single gene mutation called SYNGAP1. It is one of the top single-gene mutations being researched worldwide linked to Autism. A mutation in the SYNGAP1 gene results in intellectual disability, epilepsy, and a multitude of other symptoms. The prevalence of SYNGAP1 is projected to be 1 - 4 out of 10,000 individuals worldwide with intellectual disability. Bridge the Gap - SYNGAP Education and Research Foundation, located in Washington D.C. hosted their First Virtual Livestream SYNGAP1: Patient Voices fundraiser on Sunday, June 28, 2020. They debuted an incredible lineup of star-studded entertainers from Broadway, Hollywood, and Social Media. It was an evening of inclusion, conversation, song, and dance, most importantly HOPE!
Thank you to all of our amazing influencers, advocates, and talent that have graciously donated their time to help us raise awareness and raise the needed funds for our meeting. Our amazing Star-Studded lineup included:
Jessica Hendy, Broadway Actor, Singer, "Cats"; Eileen Grubba, Actor, Director, Producer, Guest Actress in a Drama Series NBC's New Amsterdam has been submitted for Emmy® Consideration; Laura Michelle Kelly, Actor, Dancer, "Beauty and the Beast"; James Ian, Soul Artist, R&B Singer, Songwriter, Composer; Jon Byrd, SYNGAP1 Dad, Musician, Songwriter; MaryAnn Lamb, played in Oscar Award-winning film Chicago, Choreographer, Dancer, Teacher; Jessica Walker, Performer, Broadway, Film, TV (Shea Coughlin/Kelly Gleason/ Stefan Izydorczak); Alex Colavecchio, Singer, Actress, Dancer, Photographer; Sasha Renae Brown, Actor, Singer, Dancer; Shaylen Harger, Performing Artist, YouTuber; Cynthia Rivera, Singer, Dancer, Actor. We would also like to thank Thomas Bergamo and Nadia Yakan for their hard work in producing this incredible event.
To watch the recorded performance on Youtube
Proceeds raised went to support the BTG SYNGAP1: Patient Voices FDA Patient-Focused Drug Development Meeting provides an opportunity for SYNGAP1 patients, families, and caregivers to share their experience living with SYNGAP1 symptoms, daily living challenges, and state of current treatment options.
This meeting format brings together the SYNGAP1 Community with FDA staff, pharma industry leaders, researchers, and clinicians with a focus on SYNGAP1 AWARENESS and the need for therapeutic drug development to treat SYNGAP1. This meeting is a critical step forward for the SYNGAP1 Community as they seek to inform and engage, all stakeholders, on an accelerated pathway to better SYNGAP1 therapies.
Help us meet our $10,000 Match provided by Double J Saddlery. Your continued contribution WILL make an impact, whether you donate $5 or $500. EVERY LITTLE BIT HELPS! Thank you for your support. Currently, patients with SYNGAP1 is expected to rise as genetic testing becomes more readily available. Please donate HERE!
About Bridge the Gap – SYNGAP Education and Research Foundation
Bridge the Gap – SYNGAP Education and Research Foundation (501(c)(3) is a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. The leading organization is advocating and raising funds for research and treatments for SYNGAP1. Our international outreach for SYNGAP1 children gathers critical information, which is needed to drive research towards more immediate therapeutic solutions.
Monica Weldon - (240) 347-0302; admin@bridgesyngap.org EIN# 47-2459997
