Monica Weldon

What makes Monica Weldon a Global Shaker?

In November of 2012, Monica’s twin son, Beckett, was the first to be diagnosed at Texas Children’s Genetics Clinic with the gene mutation SYNGAP1 (6p21.3).

When Beckett was 4 months old, Monica noticed he was not meeting the same milestones as his twin sister. Concerned, she began a journey to find answers.

Monica, who was a secondary school science teacher, started to blog about Beckett’s progress. Soon she had built a community of parents and caregivers that have now become a strong support group.

In 2014 she founded Bridge the Gap – SYNGAP Education and Research Foundation where she serves as president and CEO. It is her passion to help support these families by raising awareness and creating a strong foundation that will accelerate a path to better therapies.

She retired in 2016 after 23 years in education to focus on building the programs and mission of Bridge the Gap.

She is the Primary Investigator on the SYNGAP1 (MRD5) Registry and Natural History Study and a life member of the Worldwide Association of Female Professionals and a member of the first class of 2017 Illumina Ambassadors established in the United States.

In addition to leading the foundation, she is an author, public speaker, consultant on rare disease business strategies and advocates for rare disease legislation at both the federal and state levels. Several of her authored scientific publications that include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, and The Journal of Pediatrics. She has authored a book about her son Beckett’s diagnostic journey called “My Special Boy – Slow Moving Stream.”

She was a Global Genes 2015 & 2016 RARE Champion in Advocacy Award nominee for her work in the rare disease community and Wego Health Awards Nominee for years 2015, 2017, 2018.

Last updated: February 28, 2020

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