Monica Weldon

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Monica Weldon's journey is one of resilience, advocacy, and unwavering determination in the face of adversity. Born out of a mother's love and a fierce desire to help her son, her story is an inspiring testament to the power of community, innovation, and relentless pursuit of change.In November of 2012, Monica's life took a pivotal turn when her twin son, Beckett, became the first to be diagnosed with the rare gene mutation SYNGAP1 at Texas Children's Genetics Clinic. At just four months old, Beckett's developmental delays became apparent, prompting Monica and her family to embark on a quest for answers and solutions to help their son thrive.Fueled by a mother's instinct and a thirst for knowledge, Monica began documenting Beckett's journey through a blog, sharing their experiences, challenges, and triumphs with a growing community of parents and caregivers. This online platform soon blossomed into a powerful support network, providing solace, guidance, and hope to families facing similar struggles.Determined to drive change and improve outcomes for those affected by SYNGAP1-related disorders, Monica took a bold step forward in 2014 by founding the SYNGAP1 Foundation. This groundbreaking organization became the first of its kind, dedicated to spearheading research, raising awareness, and advocating for advancements in the field.Despite her long-standing career in education, spanning 23 years teaching secondary science, Monica chose to retire in 2016 to devote herself fully to the mission of the SYNGAP1 Foundation. As its visionary leader, she worked tirelessly to build programs, foster partnerships, and drive innovation, serving as the Primary Investigator on the SYNGAP1 Patient Registry & Natural History Study.In addition to her foundation work, Monica's expertise in business, strategic development, and legal affairs led her to establish Monica Weldon Consulting, LLC. Through this platform, she became a leading voice in rare disease advocacy, collaborating with lawmakers, pharmaceutical companies, and healthcare stakeholders to shape legislative and regulatory health policies. She currently is a Life Scientist hand-selected to work through Leidos, in the Assistant Secretary of State in the Department of Defense in R&E in Industry Base Policy to execute the Biotechnology Manufacturing Strategy on a $1B project plan over the next six years.Monica's impact extends far beyond the boardroom. She is a prolific author, public speaker, and consultant on rare disease business strategies, leveraging her platform to advocate for policy change at both the federal and state levels. Her scientific publications and editorial contributions have earned her international acclaim, solidifying her position as a key opinion leader in the field.Educationally, Monica holds a bachelor's degree in biology/psychology from East Texas Baptist University and a master's in science law from Northwestern University Pritzker Law School, specializing in healthcare regulatory and legislative policy. She is a proud mother of five children, including Beckett and Pyper, and grandmother to Ella.Monica's tireless advocacy efforts have not gone unnoticed, garnering her numerous award nominations and accolades, including being named one of the "Top 10 Most Woman Influential Leaders of 2022" by Era Industry Magazine. Her unwavering commitment to making a difference in the lives of those affected by rare diseases continues to inspire hope and drive progress, leaving an indelible mark on the world of healthcare and beyond.