I am so happy Monica Weldon, CEO and Founder of Bridge the Gap: Syngap Education and Research Foundation, has time in her busy schedule to chat with the Living Well With Epilepsy community!
If you have not met Monica she is fantastic. This woman is a force to be reckoned with–she is a mom of a child with an ultra rare disease who has successfully started a foundation and raised enough funds (and momentum) to support research in a disease state that has barely a handful of cases. In addition, she is smart, fun and kind and generally a delight to be around!
These days Monica and her team have been busy. I asked her to send over a quick update of what their organization has been up to, but first let me give you some background on SYNGAP1.
What is SYNGAP1
The team at Bridge the Gap: Syngap Education and Research Foundation have put together this video featuring researchers, clinicians and parents.
The team at Bridge the Gap: Syngap Education and Research Foundation have shared the following projects with us. Check them out when you have a minute:
- Second edition Syngap1 Resource Guide – translated in 8 languages
- Newly Published Syngap1 study on the disease burden data
- The 4th Center of Excellence is to be announced
- First neuro-gut study with 4th center of excellence
- Patient-Focused Drug Development Meeting
- First industry round table
So, whether you are a family affected by SYNGAP1, (or other special needs parent), a researcher, clinician, a curious person with epilepsy or just a fellow advocate, I hope you will join my chat with Monica Weldon on 3/27 on Instagram Live at 12pm PT/ 3pm ET / 7pm GMT.
You can find the chat at @livingwellwithepilepsy. Don’t miss it!