Virginie McNamar is Chief Operating Officer and President of SynGAP Research Fund dba Cure SYNGAP1 and shares the organization’s concerns about the current state of federal funding for healthcare and research and its impact on finding a cure for SYNGAP1-related disorders.
Right now, there’s a lot of uncertainty surrounding federal funding for healthcare and research, with potential cuts to the NIH, Medicaid, The Department of Education, and other programs critical to helping families living with SYNGAP1. SynGAP Research Fund is staying up-to-date on policy developments and working closely with our rare disease advocacy partners to understand the potential impact on research funding and access to care.
At SRF, we know how concerning these changes can be for families navigating life with SYNGAP1. While SRF remains focused on our mission to advance research and drive progress toward a cure, we also recognize that now is the time for our community to take action and make our voices heard.
We are proud to collaborate with organizations like the EveryLife Foundation for Rare Diseases which provides reliable, unbiased information on legislative issues that matter to our families. We all need to work together to ensure that rare disease research and patient care remain a priority. Here’s how you can stay informed and take action:
✅ Bookmark SRF’s Legislative Advocacy Page – We’ll update this regularly with key legislative developments and ways to take action.
✅ Download the 5 Calls App – This app provides scripts and connects you with your representatives on important healthcare policies.
✅ Listen to the SYNGAP10 Podcast – Stay up to date on the latest in SYNGAP1 research and advocacy efforts.
✅ Sign Up for SRF Newsletter – Get updates straight to your inbox so you don’t miss important advocacy and volunteer opportunities.
✅ Stay Engaged via @cureSYNGAP1 – Follow SRF on and other rare disease organizations on social media for real-time policy updates and calls to action.
✅ Follow Trusted Advocacy Organizations – Groups like The ARC, The Epilepsy Foundation, and The National Council on Severe Autism monitor and explain policy changes that could affect our community.
✅ Connect with Your Representatives – Follow their stance on healthcare issues and engage with them through newsletters, town halls, and direct outreach. Find your legislators here.
Even small actions—like reading an update, making a call, or sharing information—can have a big impact. Advocacy is a powerful tool, and by working together, we can protect vital research funding and ensure that SYNGAP1 remains a priority in the rare disease space.
We are in this together, and we will keep pushing forward—because our families and our community deserve nothing less.
Just a few of the SYNGAP1 Warriors for whom we advocate:
