Bridge the Gap - About Us

We are the leading non-profit patient advocacy organization, dedicated to
improving the lives of children, adults and families affected by SYNGAP1

about uS

Our History

A SEARCH FOR ANSWERS

Monica Weldon noticed early on that her son Beckett was not meeting his developmental milestones. As an experienced Mom of 3 older children and now twins Pyper and Beckett, she began to observe noticeable differences, in their development and emerging abilities. Concerned about Beckett's developmental delays, Monica began a search to gain answers and to find help for her son.

SYNGAP1 - FROM DIAGNOSIS TO TAKING ACTION

Discovering a lack of SYNGAP1 information and resources, Monica became determined to make a difference. In 2014, Monica Weldon became the Founder, President and Chief Executive Officer of Bridge the Gap – Syngap Education and Research Foundation (BTG).  The foundation was established by Monica and a small group of families with children who were also affected by SYNGAP1.

VISION

From the start, we envisioned a comprehensive mission and business strategy that encompassed multiple program goals. This included a plan to raise public awareness and provide resource information about the disorder to SYNGAP1 families, physicians, researchers, academic institutions, the rare disease community, industry, local and federal government/agency officials.

MISSION

While our programs and initiatives have expanded globally since 2014, our mission to provide SYNGAP1 awareness, advocacy, education and research support, has remained focused and consistent.

Our organization's commitment to those affected by SYNGAP1, their families and caregivers, remains at the forefront of all we do. Our mission wholeheartedly embraces a collaborative approach to help accelerate research and improved outcomes.

BUILDING STRONG RELATIONSHIPS & COLLABORATIONS

Since its inception in September of 2014, the organization has grown rapidly because of the tireless efforts of the volunteer board of trustees and parents. BTG's first step was to seek out other SYNGAP1 families. Building relationships, gaining valuable input regarding shared goals, helped shape our program priorities.  Concurrently, we began engaging with SYNGAP1 clinicians and researchers to build diverse collaborations within the SYNGAP1 community.

ADVOCACY, AWARENESS, EDUCATION & RESEARCH

From there, we expanded our collaborations to include other rare disease patient advocacy groups with similar interests and goals.  The relationships and collaborations we initially fostered, have helped us build a solid organizational foundation, from which our programs and initiatives continue to grow and flourish.


ACTION = IMPACT

BRIDGE THE GAP - SYNGAP EDUCATION & RESEARCH FOUNDATION
Bridge the Gap - Priorities
Our priorities include raising public awareness, patient and family advocacy initiatives, educational programs, scientific research conferences and financial support for research.

Our organization's commitment to those affected by SYNGAP1, their families and caregivers, remains at the forefront of all we do. Our mission wholeheartedly embraces a collaborative approach to help accelerate research and improved outcomes.

PROGRAMS & INITIATIVES
Our programs and initiatives have expanded globally since 2014, while our mission to provide SYNGAP1 awareness, advocacy, education, and research support, has remained focused and consistent. Below is a list of our core programs and initiatives that we support:

• SYNGAP1 Awareness & Advocacy
 • SYNGAP1 Education – Patients, Families & Caregivers
 • SYNGAP1 (MRD5) Online Natural History Data Registry
 • SYNGAP1 Research Collaborations and Partnerships
 • SYNGAP1 Family Meet Ups
 • SYNGAP1 Family Support Group (*private) on Facebook
 • SYNGAP1 Centers of Excellence
 • SYNGAP1 International Scientific Conferences
 • SYNGAP1 Educational Materials
 • SYNGAP1 Newsletters
 • SYNGAP1 Fundraisers
We are taking Action to Bridge the Gap to a Cure for SYNGAP1 Patients, Caregivers and Families!
SYNGAP1 COMMUNITY STAKEHOLDERS

Subscribe to Our Monthly Newsletter

BTG's Monthly Newsletter provides information
about the latest news in SYNGAP1 research, healthcare,
advocacy and upcoming events

Executive Board

We come together, from diverse backgrounds, levels of experience and skill sets.

Together, we are accomplishing strategic goals and setting new goals.

Together, we are accelerating the creation of new research pathways to improve the lives of patients and families affected by SYNGAP1.

Advisory Board

Our Advisory Board is comprised of a, diverse group of talented individuals, committed to supporting BTG's mission and vision.

Each member provides invaluable input and assistance with BTG programs and initiatives that benefit the SYNGAP1 community.

Medical/Scientific Advisory Board

Our Medical/Scientific Advisory Board is comprised of talented and dedicated SYNGAP1 clinical and research experts. They inspire us with their deep commitment to SYNGAP1 patient-centered clinical healthcare and research.  Their guidance, has been and continues to be, an essential component, driving who we are as an organization.

The Medical/Scientifc Advisory Board supports BTG's mission and vision through active engagement with our programs and initiatives, SYNGAP1 patients and families and other SYNGAP1 community stakeholders.

They support expansion of SYNGAP1 collaborative research efforts and provide encouragement to young neurscience  investigators.

information

About Syngap1

Symptoms, Diagnosis, Treatment

Learn More