After years of tests, after countless late-night WebMD searches, and a sea of referrals…after hours on the phone with insurance companies and payment plans. After all of that. That is when you FINALLY receive the words: We think your son has a rare condition.
And just when you thought you would get answers. That — for patients with rare and orphan conditions — is only where your journey begins.
At least that is where the journey began for Monica Weldon, our guest for this episode of Rare Voices.
Monica was able to absorb those words and the emotional roller coaster attached to them and create a network of support and a vision for what advocacy can mean for patients with rare and orphan conditions.
In 2014, Monica founded Bridge the Gap: SYNGAP Education and Research Foundation. While most patient advocacy groups focus on an illness, Monica focused her foundation on the research involving a rare gene mutation. As a result, she has been able to build a coalition with other advocacy groups, research institutions, and, most impressively, with manufacturers.
Today, Monica is a force for change in patient advocacy, an author, and keynote speaker at countless conferences even beyond health care. I’m excited to bring you her story during National Caregivers Month, because, most importantly, Monica has redefined what it means to be a caregiver with what she has accomplished on behalf of her son, Beckett.
More About Monica
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. She was named 2020 Global Shakers Rare Disease Champion.
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