SynGap1 Foundation Announces New Board Members During National Rare Disease Week in Washington, DC

The SYNGAP1 Foundation

The SYNGAP1 Foundation announces new board members. The Foundation promotes pioneering research into SYNGAP1 changes associated with intellectual disability, epilepsy, autism, and other overlapping and neurodevelopmental disorders.

Matt Toresco is the Founder & Editor-in-Chief of The Advocate: Supporting the Patient Voice. He is also a Partner & Chief Commercial Officer at The Brooks Group. He has nearly 20 years of healthcare experience & is committed to the growth of the patient voice & patient advocacy. He himself is an advocate for patients facing the many struggles of chronic pain and the hurdles chronic pain patients face on a daily basis from all angles of today's society. Having had his 13th orthopedic surgery & third spinal fusion in 2021, Matt's lived experience and tenure in many different areas within healthcare have equipped him with a unique lens to push organizations out of their comfort zones, challenge the conventional, and successfully implement patient-centered strategies throughout all healthcare organizations.

Liz Sachnoff is a clinical trial professional working for a Contract Research Organization aligned to overseeing rare disease clinical trials, with 18 years of experience in the pharmaceutical, biotech, and medical device field. 

Rich Elles is a project management professional, patient advocate, and veteran of the life science and medical technology industries. Rich is a strategic advisor to Tortus AI and volunteers with EveryLife Foundation & the Life Goes On Foundation.

Stephanie Lee is a business operation and accounting professional. She has a BA in political science and philosophy from Christopher Newport University and an MS in accounting from Liberty University. She works as the Business Operations Lead at Palo Alto Networks.

Tracy Carroll brings expertise in global enterprise stakeholder relations, specializing in strategic communications and transformative special projects. He is a live streaming pioneer and a practitioner of performance improvement programs spanning Wall Street, Washington, Health Care, Energy & Academe.

John Groth is Vice President, Pharma at Optima Corporation. John has over a decade of experience in Health Sciences & Technology. He has 20+ years of commercial finance experience, a Master of Science in Law from Northwestern University Pritzker School of Law and degrees in Business Administration and Finance.

Neil Morris is Senior Director, CIO, leading IT for Maxar Technologies, with experience in digital transformation, user experience, business processes engineering, software development, and infrastructure at scale. Neil holds a Master's in Information Systems Management and a Bachelor's in Business Management.

Rodrigo Gomez is a business development professional with a BSc from Tecnologico de Monterrey (Mexico), a MSc from Heriot-Watt University (Scotland), and currently a Doctoral Candidate in Business Administration at Liberty University. He works as Regional Director for Veluvine B.V. (Netherlands).

"We are so pleased with this new infusion of talent," exclaimed Monica Weldon, Founder of SYNGAP1 Foundation. "We're now even better poised for growth and improved outcomes in advocacy on behalf of those dealing with SynGAP1 as well as stimulating more clinical research that has already proven beneficial to our expanding global community."


The SYNGAP1 Foundation mission is based on Advocacy, Education and Research. We bridge gaps and make positive and meaningful differences in lives on every continent. 

Advocacy - We strive to make every SYNGAP1 community member feel valued, empowered, and connected. Our efforts in patient advocacy and family participation in ongoing research is already accelerating pathways to better treatments.

Education - SYNGAP1 Family Conferences and Clinical Meet-Ups enable patients and families worldwide to connect in a comfortable setting where they gain knowledge about SYNGAP1-related resources that help them navigate their journey.

Research - We proudly steward the largest SYNGAP1 patient database in the world. Our data has been used to discover new mechanisms, biomarkers, and endpoints to support clinical trials.

INFORMATION:  or [email protected]

Source: SynGap1 Foundation


Tags: autism, epilepsy, investors, SYNGAP1

About Syngap1 Foundation

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Dedicated to Improving the Lives of Families Affected by SYNGAP1 & Related Overlapping Neurological Disorders

Monica Dudley-Weldon
President & Founder, SYNGAP1 Foundation, Syngap1 Foundation
Syngap1 Foundation
1012 14th Street NW (Suite 500)
Washington, DC 20005
United States