Title: COVID19: Approaching New Research Strategies for Rare Diseases
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. She is the Primary Investigator on the
SYNGAP1 (MRD5) Registry and Natural History Study. She is 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
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 “Slow Moving Stream - My Special Boy”. 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
will be attending Northwestern University Pritzker School of Law in the Fall of
2020 to earn her Masters in Science Law.
She has five beautiful children, Haleigh (28), Taylor, USMC (25), Sawyer
(23), and the twins Beckett & Pyper (12). 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, &
2019. 2020 Global Shakers Rare Disease Champion.