Are you interested in an opportunity to meet with your Members of Congress this August?
Advocacy is about sharing your story and putting faces to Fragile X. By being vulnerable and honest, you can help your Members of Congress understand how Fragile X impacts you and your family’s lives – the challenges and the successes. It is empowering to advocate for Fragile X during both the NFXF Advocacy Day and the August Congressional recess with other rare disease Advocates. Attending the NFXF annual in-person Advocacy Day may not be possible for everyone. We are excited to share this in-district and virtual advocacy opportunity from our partners at the EveryLife Foundation!
EveryLife’s Rare Disease Legislative Advocates (RDLA) program is once again organizing their Rare Across America in-district meetings.
Details:
- Registration is required for each individual and there is no cost to participate.
- Virtual and In-Person meetings will take place with your Members of Congress and/or the Member’s staff between August 7th and 18th.
- All Senate meetings will be scheduled VIRTUALLY on zoom or similar. All House meetings will take place IN-PERSON at the local in-district office. You will have the opportunity during registration to request to meet with both of your Senators and one Representative.
- RDLA will schedule the meetings for you and help you prepare by providing legislative resource materials, hosting pre-meeting training webinars and open office hours. No prior advocacy experience is necessary!
- We will provide Fragile X-specific information and materials as the meetings get closer.
Important Dates:
- July 11th: Registration Closes
- July 18th: 2 PM ET – Rare Across America General Training Webinar
- July 25th: 2 PM ET – Share Your Story with Policymakers Webinar
- August 4th: 12 – 1 PM ET – Office hours with the RDLA team
- August 7th – 18th: Meetings with Members of Congress
- August 11th: 12 – 1 PM ET – Office hours with the RDLA team
Rare Across America is a great opportunity for you to introduce yourself to your Members of Congress or continue to build on your relationships. It is a great opportunity to inform and educate them about Fragile X and update them on topics you have previously discussed. Fragile X Advocates have been powerful participants in previous Rare Across America meetings, let’s keep that reputation going!
Learn more and register: Rare Across America – Registration – EveryLife Foundation for Rare Diseases
Thank you for advocating! YOU are making a difference!
Learn more about NFXF Advocacy: https://fragilex.org/get-involved/advocacy/
about
Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.
learn more
Camping and Fragile X
Because of the hard work of NFXF advocates over the past 20 years, decision-makers in Congress know what Fragile X is. Being present, persistent, and problem-solving is what gets things done in Congress.
Congress Supports Fragile X Research and Awareness
In March, over 150 NFXF Advocates descended onto Capitol Hill to once again advocate for Fragile X and raise awareness among Congress. A top ask is to join efforts to support Fragile X programs at [...]