PODCASTS
Monica Weldon Consulting, LLC Podcasts: Insightful Conversations on Rare Disease and Beyond
Here's an Ally: Syngap1 Foundation ft. Monica Dudley-Weldon
The Neurological Disorder Podcast
May 20, 2024
Today's episode features Monica Dudley-Weldon, the founder and CEO of the Syngap1 Foundation. With a background in biology and teaching, as well as a law degree, Monica became an advocate after her son, Beckett, was diagnosed with Syngap1-Related Disorder, a rare intellectual disorder often accompanied by autism, epilepsy, and behavioral issues. At the time of Beckett's diagnosis, little information was available, but Monica's advocacy has greatly expanded the resources and knowledge surrounding the condition.
In this episode, Monica discusses the lesser-known symptoms of Syngap1-Related Disorder and the potential of treatments like Antisense Oligonucleotide Therapy (ASOs). She shares Beckett's story and explains how his diagnosis fueled her drive to uncover more about the disorder. The conversation also covers the importance of genomic testing, newborn screening, and legislative efforts like the Promising Pathway Act, which Monica is working on with Senator Braun. She emphasizes the need for patient and caregiver input in clinical trial design and outlines her ambitious plans to broaden Syngap1 research within the field of neurology.
Please subscribe to The Neurological Disorder Podcast on Spotify, Apple Podcasts, or wherever you listen to podcasts!
Driving the Discussion: SYNGAP1 Foundation
April 23, 2023
SYNGAP1 Foundation President, CEO & Founder Monica Weldon discusses their work for SYNGAP1 and related overlapping neurological disorder patients.
SYNGAP1: A Genetic Disorder Involved in Autism, Epilepsy, and Maybe Alzheimer's, Parkinson's, and Schizophrenia
8/11/22
Want to know what a specific disease is, who it affects, and what's being done to help prevent, diagnose, or treat it now or in the future? Whether you're just curious about a disease, have it yourself, have a family member with it, or are a healthcare professional, this podcast will give you the quick overview you are looking for! It will also give you resources and references you can use to learn more about that disease. As a result, you'll be more educated about the disease, learn about ways to prevent, diagnose, or treat it, get a glimpse into what's being done now to work on the disease, and discover what improvements may lie. For more information, visit www.jeff-ostroff.com
Monica Weldon, Founder of Bridge the Gap: SYNGAP Education and Research Foundation
11/20/20
After years of tests, 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.
Just when you thought you would get answers, that is only where your journey begins for patients with rare and orphan conditions. 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 research involving a rare gene mutation. As a result, she has built a coalition with other advocacy groups, research institutions, and, most impressively, manufacturers.
Today, Monica is a force for change in patient advocacy, an author, and a keynote speaker at countless conferences 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.
TRYING OUR PATIENTS
October 23, 2019
As genetic sequencing gives scientists new tools to hone in on medical mysteries, Washington politicians flirt dangerously with policies that would stymie the genomic revolution while giving patients scant pricing relief at the pharmacy counter.
When your son has the sixth SYNGAP1 diagnosis in the world.
February 27, 2018
During Rare Disease Week, we talked to Monica Weldon, whose son was the sixth person diagnosed with SYNGAP-1, a gene mutation linked to autism. She tells us about her journey from working as a school teacher to becoming the President/CEO and founder of the SYNGAP1 Foundation, formerly Bridge the Gap - SYNGAP Education and Research Foundation, the first and largest SYNGAP1 advocacy organization in the world. She shares what it was like to receive a diagnosis that had no structure in place for her son and how she pushed through the hard times and made progress in research and awareness of sensory processing disorders. Check out the SYNGAP1 Foundation online at Medical Research in Washington, D.C. | Syngap1 Foundation
