“Advocacy” is considered by many to be a scary word, but if you’re a parent or caregiver of someone living with SYNGAP1-related disorders, you advocate almost every day already! Joining the SRF Advocacy team is the logical next step.
We have collected several answers to frequently asked questions about becoming an Advocate along with a collection of resources to help you understand the critical importance of this role. As new lawmakers come and go, policies and governmental resources fluctuate. This can leave our children behind and isolated.
The importance of our Advocates cannot be overstated, and we hope you’ll join us. After reviewing this page, please contact Jackie Kancir if you have any questions:
- Jackie Kancir, SRF Patient Advocacy Director
- Book a meeting via Zoom with Jackie
- Email: jackie@cureSYNGAP1.org
Q: What if I have no experience?
A: No problem! We all started at ground zero, but when you love someone with SYNGAP1-related disorders (SRD), at some point or another, you become an advocate! It may be small – talking with your doctor, school, or insurance company about what is best for your Syngapian, or even just sharing your story with family, friends, neighbors, or someone you meet on the street – but this is what advocacy is. The SRF advocacy team helps you proactively gain the skills, knowledge, and comfort level for you to optimize your ability to advocate for all families living with SRD effectively when the need arises.
Q: How much time should I expect to commit?
A: Advocacy opportunities are flexible and can fit various schedules:
- Minimal commitment (1-2 hours/month): Following updates, sharing social media content
- Medium commitment (4-6 hours/month): Participating in state councils, attending virtual training
- Active engagement (8+ hours/month): Attending national events, leading state initiatives
- Project-based: Time-limited commitments for specific campaigns or events, once or multiple times during the year
Q: What impact could I make by joining the SRF advocacy team?
A: Volunteers on SRF’s advocacy team work to expand SRF advocacy expertise, strengthen advocacy partnerships, and elevate SRF influence in policymaking decisions by:
- Engaging in state-level policy councils
- Researching and documenting state-specific resource information for our community (Medicaid waivers, special education, etc)
- Annual attendance in national initiatives (Rare Disease Week, Rare Across America, etc)
- Collaboration with national organizations (eg, EveryLife Foundation Community Congress, Epilepsy Advocacy Network, Autism Science Foundation’s AGENDA, National Council on Severe Autism, Regulatory Affairs Professionals Society, etc)
- Coordinating with SRF leadership and SRF’s Med/Sci team to prepare for regulatory engagement to advance the therapeutic pipeline
Q: What is SRF’s approach to advocacy?
A: We emphasize evidence-based, constructive engagement with decision-makers and legislators by providing our community with:
- Monthly virtual advocacy chats where families can ask questions on current challenges and brainstorm ideas for actionable steps to advocate
- A state advocate network engaging in state-level policy councils
- Notice of free training opportunities to incubate skilled advocates
- Guidance for effective communication with lawmakers
- Support in sharing their experiences and developing actionable recommendations
Q: How can SRF families engage in the legislative process?
A: We encourage SRF families to:
- Review official legislative documents from .gov sources and watch Congressional hearings
- Visit the SRF advocacy page to stay up-to-date in ways to get involved
- Connect with legislators through action items on the SRF advocacy page
- Share personal experiences and specific concerns with legislators when engaging in the legislative process
- Maintain professional, constructive dialogue
- Participate in our virtual advocacy initiatives
Q: Does it make a difference when meeting with legislators if an advocate opposes or supports the proposed legislation?
A: Professional, well-informed advocates can be effective regardless of their position. What matters most is:
- Understanding the actual legislative text and process
- Clearly articulating how legislation affects their situation
- Offering specific, constructive feedback
- Maintaining respectful dialogue
- Being clear and concise; time/attention is usually limited
- Following-up after meetings with one-pagers and a thank you
- Building long-term relationships with legislative offices
Success Stories:
- Victory Against Insurance Giants: SRF parents Sara Driscoll and Jesse East documented their journey of successfully battling insurance denials for seizure medication and waiver coverage
- State Legislative Feature: SRF Patient Advocacy Director, Jackie Kancir, and her daughter with SRD, Jadyne, were featured in the 2025 Vanderbilt Kindred Stories collection that will be distributed to Tennessee lawmakers on Disability Day on the Hill, highlighting the need for increased support for educators and families caring for students with complex behavior challenges
- Education Settlements: Multiple SRF families have achieved positive outcomes of special education settlement agreements with assistance from SRF advocacy team members
- Caroline Carts: Two SRF advocates, Heather Bensch and Sarah Clinton, successfully advocated for increased access to Caroline Carts, which improve shopping safety and accessibility for individuals with SRD.
- Crisis Stabilization Program: SRF families worked with state leadership to provide access to START, a cross-systems collaboration for crisis prevention and stabilization
- New Emergency Room Protocols: Our advocacy efforts have led to the development of IDD-specific Emergency Stabilization Protocols to guide ER staff in improving outcomes for individuals with IDD who present in crisis
Q: What are additional trusted sources for analyzing potential impacts of government proposals?
A: We recommend:
Primary Sources:
- Congress.gov – Legislative text and status
- CBO.gov – Nonpartisan budget analysis
- House.gov and Senate.gov – Committee materials
- Budget.house.gov and Budget.senate.gov – Budget documents
- Medicaid.gov – Federal policy guidance
- FDA.gov/patients – FDA’s patient engagement resources
- Regulations.gov – Federal rulemaking portal
- ClinicalTrials.gov – Database of clinical studies
- NIH.gov/health-information – NIH research and guidelines
- FDA Advisory Committee Calendar – Upcoming meetings and materials
Nonpartisan Analysis:
- KFF.org – Healthcare policy analysis
- MACPAC.gov – Medicaid policy advisory commission
- GAO.gov – Government Accountability Office
- CFRB.org – Committee for a Responsible Federal Budget
- CRS Reports – Congressional Research Service (through Congress.gov)
- Regulatory Focus – Regulatory Affairs Professionals Society news and analysis
- FDA Law Blog – Analysis of FDA regulations and policies
- State Medicaid agency websites
Best Practices:
- Read primary government sources
- Watch committee hearings directly
- Compare multiple nonpartisan analyses
- Contact Jackie Kancir, SRF Patient Advocacy Director, at jackie@cureSYNGAP1.org for help with interpreting complex documents
Stay Connected:
- Sign up for the SRF advocacy team through the SRF volunteer page
- Set a reminder for the monthly virtual advocacy chats (2nd Monday at noon ET every month)
- Follow SRF on social media – @cureSYNGAP1
- Subscribe to and listen weekly to SYNGAP10 Podcast
- Subscribe to the SRF newsletter
- Bookmark the SRF advocacy webpage