Monica Weldon Rare Disease Advocate, President & CEO, Bridge the Gap

Monica Weldon

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, she noticed he was not meeting the same milestones as his twin sister.

Monica then began a journey to find answers to help her son. She started to blog about his progress and this led to building a community of parents and caregivers that are now a strong support group.

She is the Founder and President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation. 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 teaching secondary science. Her new focus is on building the programs and mission of Bridge the Gap – SYNGAP Education and Research Foundation.

In addition to leading the foundation, she currently is consulting on rare disease non-profit organization strategies and advocates for rare disease legislation at both the federal and state levels.

She is a graduate from East Texas Baptist University with a Bachelor’s of Science in Biology/Psychology (1991) and Secondary Certification in Education (1995). She is the wife of Chris Weldon and has five beautiful children, Haleigh (25), Taylor, USMC (22), Sawyer (20), and the twins Beckett & Pyper (9). She was a Global Genes 2015 & 2016 RARE Champion in Advocacy Award nominee for her work in the rare disease community.

 

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