Today's guest: Monica Dudley-Weldon Her son was the 6th child diagnosed in the world!
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. When Beckett was 4 months old, we noticed he was not meeting the same milestones as his twin sister. We then began a journey to find answers to help our son. She began to blog about his progress & this led to building a community of parents & caregivers & a strong support group. She is the Founder, President/CEO of Bridge the Gap – SYNGAP Education & Research Foundation. It is her passion to help support these families by raising awareness & 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 & mission of Bridge the Gap – SYNGAP Education and Research Foundation. She is the Primary Investigator on the SYNGAP1 (MRD5) Registry & Natural History Study. She is a life member of the Worldwide Association of Female Professionals, DIA 2016 Patient Scholar, a member of the first-class of 2017 Illumina Ambassadors established in the United States, and a member of Women in Bio – Capital DC and Texas Chapters.
In addition to leading the foundation, she is an author, public speaker, consultant on rare disease business strategies & advocates for rare disease legislation at both the federal & state levels. Several of her authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, The Journal of Pediatrics, and Value in Health Journal. She is also an internationally known editorial contributor and key opinion leader for Pharma Boardroom, London. She has authored a book about her son Beckett’s diagnostic journey called “Slow Moving Stream - My Special Boy”.
She is a graduate from East Texas Baptist University with a Bachelor of Science in Biology/Psychology (1991) & Secondary Certification in Education (1995). She is a Northwestern University Pritzker Law School candidate earning her Master in Science Law with a concentration in health and data privacy law. The projected graduation is in the Summer of 2022. She has five beautiful children, Haleigh (29), Taylor, USMC (27), Sawyer (24), & the twins Beckett & Pyper (13). A Global Genes 2015 & 2016 RARE Champion in Advocacy Award nominee & WEGO Health Awards Nominee for years 2015, 2017, 2018, 2019, 2020, & 2021 and chosen as a Global Shakers Rare Disease Awardee 2020 and 2021.
To get in touch with Monica or follow her on Social Media:
Founder of Syngap1
President/CEO
SYNGAP1 Foundation
1012 14th Street NW, Suite 500
Washington DC 20005
O: 240-347-0302
C: 832-671-0010
Website: http://www.syngap1foundation.org
Facebook Page: https://www.facebook.com/SYNGAP1Foundation
Twitter Page: https://twitter.com/Syngap1Fnd
Instagram: https://www.instagram.com/syngap1_foundation/
Linkedin: https://www.linkedin.com/company/syngap1foundation/