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14. Here's an Ally: Syngap1 Foundation ft. Monica Dudley-Weldon
Manage episode 419199870 series 3497981
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Today's episode features Monica Dudley-Weldon! Not only is she the founder and CEO of the Syngap1 foundation, but she also has a background in biology and teaching and attended Law School. Her son, Beckett, was the 6th person in the world and 3rd in the United States to be diagnosed with Syngap1-Related Disorder, an intellectual disorder often accompanied by autism, epilepsy, and other behavioral abnormalities.
In this episode, Monica delves into the relatively unknown symptoms of this condition and treatments, such as ASOs (Antisense Oligonucleotide Therapy), that are currently being researched. When Monica embarked on her journey to learn more about Syngap1-Related Disorder and advocate for others with this condition, there were only 3 Google pages present, which were solely focused on animal models. Since then, her tireless advocacy has significantly contributed to the plentiful information available on this condition.
In this episode, we dive into Beckett's story and how her son's diagnosis pushed Monica to find more answers to this rare condition. She elaborates on current research on Syngap1, and we also talk about the importance of increased access to genomic testing and newborn screening. Of course, change happens with the legislature, so we talk about her work with Senator Braun on the Promising Pathway Act and the necessity of patients' and caregivers' voices when designing clinical trials. Monica has ambitious goals for extending Syngap1 research to a broader spectrum, so she shares her future plans to expand the world of neurology!
Make sure to subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to your podcasts!
Helpful Links:
- https://syngap1foundation.org/
- https://everylifefoundation.org/
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