Monica Weldon
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 PharmaBoardroom, 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's 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. She has five beautiful children, Haleigh (29), Taylor, USMC (26), 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 and chosen as a Global Shakers Rare Disease Awardee 2020.
Articles: Monica Weldon
A Call for Collective Responsibility in Rare Disease Communities
USA / Drawing on her experience as rare disease patient advocacy group SYNGAP1 Foundation’s founder and former president, Monica Weldon argues for the need to standardize genomic testing practices, warns against the possible ethical implications of individualized medicine, and makes a cause for a more holistic approach within rare disease communities. Need for a Standardized Approach…
Rare Diseases: Reverse Engineering for Drug Development
USA / Monica Weldon draws on her own experience as a rare disease patient advocacy group CEO to outline how such groups can work collaboratively with other stakeholders in drug development to better target funding and create a more patient-centric drug development process that ultimately gets better drugs to rare disease patients more quickly. How did…
Inserting the Patient Voice: Ethical Challenges in the Use of Healthcare Data
USA / Patient advocate and regular PharmaBoardroom contributor Monica Weldon examines how healthcare’s data revolution has thus far largely ignored the patient voice and argues for a more inclusive approach to drive better, fairer outcomes. It is natural to want to be healthy, have healthy children, have the best quality of life, and hope for future…
Embryonic Gene Editing: How Far is Too Far to Find a Treatment for Your Child?
Global / Rare disease patient advocate Monica Weldon outlines some of the ethical conundrums around embryonic gene editing. With CRISPR technology again in the news as part of the rush to develop COVID-19 treatments and vaccines, Weldon highlights the arguments for and against embryonic gene editing from a patient/parent perspective and makes some predictions for the future…
The Role of Patient Associations in Rare Disease Drug Development
Opinion / Monica Weldon, CEO and president of Bridge the Gap – SYNGAP Education and Research Foundation, shares her recent experience at the US Drug Law and Regulation course in Washington, DC and expands on the role that patient associations can play in the drug development process. In today’s environment of high-stakes, expensive, rare disease drug…
Taming the ‘Wild West’ of CBD
USA / Monica Weldon looks at the history of medicinal CBD, its current usages in the USA, and why robust scientific research on its efficacy need to be conducted in order to ensure the safety of rare disease patients – many of them children – who are using CBD products for their conditions. This piece was written…
Success in Rare Disease Patient Advocacy — What it Takes
Opinion / After her son was diagnosed with SYNGAP1 – an extremely rare gene mutation – Monica Weldon founded Bridge the Gap – SYNGAP Education and Research Foundation to support families of those suffering from the illness and to accelerate the path to better therapies. Here, Monica shares her organisations secret to success in the rare-disease space. Due to…
Mythbusting: Patient Access to Rare Disease Treatments
Opinion / After her son was diagnosed with SYNGAP1 – an extremely rare gene mutation – Monica founded Bridge the Gap – SYNGAP Education and Research Foundation to support families of those suffering from the illness and to accelerate the path to better therapies. Here Monica discusses the incredibly low rate of treatment options for patients suffering from a rare…
Engaging Patients and Communities for Better Outcomes
USA / After her son was diagnosed with SYNGAP1 – an extremely rare gene mutation – Monica founded Bridge the Gap – SYNGAP Education and Research Foundation to support families of those suffering from the illness and to accelerate the path to better therapies. Here she discusses the importance of community for tackling rare diseases. The most important goal…
Latest Report
