Bridge the Gap – SYNGAP – Education and Research Foundation

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Mission

Bridge the Gap – SYNGAP Education and Research Foundation is a non-profit family organization with a mission serve, educate and fund research for families coping with the effects of SYNGAP mutations through its mission of:

  • increased awareness
  • improved education
  • advocacy for patients and families
  • support and funding for research

Recent and ongoing projects

Family and professional conferences on SYNGAP1 – next meeting International SYNGAP1 Conference
November 2020

Family Education Meetup Program – Average 4 every other year

FDA External Led Meeting – November 2019

Over $300,000 in grant awards and investments for helping fund current, ongoing, and future research and research-related projects:

Biomarker Study at Texas Children’s SYNGAP1 Center of Excellence

Natural History Study and special research projects in partnership with Kennedy Krieger Institute, Baylor College of Medicine, and Scripps Research Institute Florida

Translational science research at Kennedy Krieger Institute and John’s Hopkins School of Medicine

International SYNGAP1 (MRD5) Patient Registry

Stem cell studies at Texas Children’s Hospital

Website and media resources and support

Brochure project for use in education, awareness, and advocacy and language translations

Facilitating creation of a uniform Standard of Care or consensus document for SYNGAP1 and ICD-10 Code and ICD-11 Code

Professional conference exhibits – Society of Neuroscience and American Epilepsy Society

Conferences and Various Speaking Engagements – NORD Summit, World Orphan Drug Congress, RDLA Rare Disease Week Lobby Days, ASENT, and conferences that focus on growing our mission.

Educational Events – Rare Disease Day and Local community events to support family’s individual awareness events

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