Monica Leigh Dudley-Weldon

Monica Leigh Dudley-Weldon (born 1969) is an American rare disease advocate, educator, and biotechnology consultant, best known for her pioneering work in SYNGAP1-related disorders. She is the founder of the SYNGAP1 Foundation, the first organization in the world dedicated to advancing research, raising awareness, and supporting families affected by SYNGAP1 gene mutations. Monica is also the co-discoverer of the sensory processing mechanism linked to SYNGAP1 and was instrumental in obtaining the ICD-10 code for SYNGAP1-related disorders. Her efforts have made her a leading figure in the rare disease community, where she continues to advocate for policy changes and innovative therapeutic solutions.

Early Life and Education

Monica Leigh Dudley-Weldon was born in Pasadena, Texas, where she grew up and developed a passion for science and education. She earned her Bachelor’s degree in Biology and Psychology from East Texas Baptist University. Later, she pursued a Master of Science in Law and Healthcare from Northwestern University Pritzker Law School. These academic pursuits helped shape her career, where science, education, and advocacy would later converge.

Career in Education

Before entering the realm of rare disease advocacy, Monica spent 23 years teaching secondary science. As an educator, she made an impact by inspiring countless students through her passion for biology and scientific discovery. However, her life and career took a significant turn in 2012 when her son, Beckett, was diagnosed with a rare gene mutation—SYNGAP1—one of the earliest known diagnoses of the condition. Beckett was the sixth person in the world to be diagnosed with this rare disorder at the Texas Children’s Genetics Clinic.

Founding of the SYNGAP1 Foundation

In response to her son’s diagnosis, Monica embarked on a mission to find answers and drive research into SYNGAP1-related disorders. In 2014, she founded the SYNGAP1 Foundation (formerly known as the Bridge the Gap SYNGAP1 Educational Research Foundation), the first global organization dedicated to research, awareness, and patient advocacy for SYNGAP1. The foundation became a lifeline for families around the world dealing with this rare condition, offering education, support, and access to cutting-edge research.

Monica’s leadership led to significant advances in SYNGAP1 research, including fostering partnerships with leading scientists, pharmaceutical companies, and government agencies. One of the most notable milestones under her leadership was the creation of the SYNGAP1 Patient Registry & Natural History Study, which provided essential data for understanding the condition’s impact on individuals.

Sensory Processing Discovery and ICD-10 Code for SYNGAP1

In her pursuit of understanding the complexities of SYNGAP1, Monica co-discovered the sensory processing mechanism associated with the disorder, a breakthrough that advanced both research and clinical care for those with SYNGAP1 mutations. This discovery helped clarify how SYNGAP1 mutations affect neurological function, offering new avenues for treatment.

In a significant contribution to global medical recognition of SYNGAP1, Monica spearheaded the application for an ICD-10 code for SYNGAP1-related disorders. The code was approved by the CDC ICD code committee, providing an official designation for the disorder that is critical for patient care, insurance reimbursement, and further research.

Advocacy and Legislative Efforts

Monica’s role as an advocate extends beyond her foundation work. She has been actively involved in shaping health policies at both the state and federal levels. She is a strong proponent of the Promising Pathways Act 2.0, which aims to streamline the approval process for new therapies by collecting real-world evidence during clinical trials. Her advocacy for this legislation reflects her dedication to ensuring that rare disease patients have faster access to life-saving therapies.

Public Speaking and Consulting

Monica is a sought-after speaker, having delivered keynote addresses at numerous scientific and medical conferences around the world. Her presentations often focus on the intersection of rare disease research, patient advocacy, and healthcare policy. In addition, she is the founder of Monica Weldon Consulting, LLC, where she offers strategic advice to pharmaceutical companies, healthcare organizations, and advocacy groups on rare disease policy, research strategies, and business development.

Transition and Continuing Legacy

In 2024, Monica began transitioning away from her role as President of the SYNGAP1 Foundation, after guiding the organization through a decade of groundbreaking work. Although the SYNGAP1 Foundation was dissolved, Monica ensured that the foundation’s research database and final publication on SYNGAP1 were preserved, with plans for future reviews.

She continues to serve as a strategic advisor in biotechnology and rare disease advocacy, most notably as the Lead Industry Base Policy Strategic Analyst at Leidos under the Office of the Secretary of Defense, where she oversees biotech technology and biomanufacturing initiatives, drug development, and autism research.

Personal Life

Monica has five children, including Beckett, whose diagnosis sparked her advocacy journey. She is also a grandmother to Ella. Her family has faced significant health challenges, with her father suffering from dementia, her mother with Alzheimer’s, and her son with SYNGAP1-related cognitive disorders. These personal experiences continue to fuel her passion for fighting neurological disorders.

Awards and Recognition

Monica’s tireless advocacy and leadership have earned her numerous awards and accolades. She was named one of the “Top 10 Most Influential Women Leaders of 2022” by Era Industry Magazine. Her contributions to rare disease research and policy continue to inspire the rare disease community and beyond.

Legacy

Monica Leigh Dudley-Weldon’s work in the rare disease field has left an indelible mark. Through her advocacy, leadership, and relentless pursuit of scientific breakthroughs, she has improved the lives of countless families and has established a foundation for ongoing research into SYNGAP1-related disorders. Her efforts have not only raised awareness but have also opened new doors for medical treatments, policy reforms, and the future of rare disease care.