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 SYNGAP1 Foundation, formerly (Syngap1). The foundation was established by Monica and a small group of families with children who were also affected by SYNGAP1.
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, and local and federal government/agency officials.
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 improve 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. Syngap1'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
SYNGAP1 Foundation Our Priorities
Our priorities include raising public awareness, patient and family advocacy initiatives, educational programs, scientific research conferences, and financial support for research.
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 Syngap1 Foundation to a cure for SYNGAP1 patients, caregivers, and families!