We had an incredible group of Dravet syndrome parents and grandparents in Washington, D.C. last week (February 24-27, 2026) to participate in Rare Disease Week on Capitol Hill!
This event, sponsored by EveryLife Foundation for Rare Diseases / Rare Disease Legislative Advocates, was a great opportunity for us to learn more about issues that impact our community and what we can do to promote federal legislation which could improve the lives of patients with Dravet syndrome and other rare diseases.
It is truly inspiring to see hundreds of rare disease advocates representing over so many different patient organizations gathered together! While our individual rare diseases may be very unique in many ways, we have so much in common in terms of the struggles that impact our communities. When we come together, our collective voices are so much more powerful!
We spent a day and a half learning about some current potential legislation in Congress which could benefit our communities and how to effectively share our personal stories. The next day we went to Capitol Hill where we attended meetings with congressional staff members so that we could share about why these things are important to us. Because we had so many advocates this year, we were able to have meetings with TWELVE different states! On Friday, Gloria and I attended the Rare Disease Day event at the NIH.
When you have the opportunity to share your personal story, it makes a difference! Our members of Congress need to hear from the people that live in the districts they represent. Even if you can’t physically go to Washington, you can contact their offices by email, phone, or by meeting with the staff that work in their district office in your state.
Special thanks to all of this year’s amazing participants who sacrificed time with their families and work in order to be a part of this event:
- Jan Billeb – Wyoming
- Shannon Cloud – Georgia
- Rachel Beirne – West Virginia
- Lindsay Dagan – Washington
- Keri Erickson – Minnesota
- Tatiana Lopez & family – Florida
- Gloria Rodriguez – Texas
- Lindsay & Clara Samples – Idaho & Virginia
- Will Seitz & Irina Seitz Karchebnaya – Maryland
- Amanda Stansfield – Washington
- Kim Tavares & Renee Cortise – California
- Alyce Thompson – Maryland
- Austin Watson – Idaho
- Candace Watson – Indiana
Here are some of the things we asked our members of Congress to do to support our community:
- Join the Epilepsy Caucus and support legislation for a National Plan for Epilepsy (H.R. 1189 / S. 494)
- Join the Rare Disease Caucus
- Support the Credit for Caring Act (HR 2036 / S 925)
- Support the Genomic Answers for Children’s Health Act (HR 7118)
- Protect Medicaid waiver programs, research funding and special needs education
- Ensure that genetic treatments for rare diseases have easy approval pathways and access
If you’d like to stay up to date with issues that impact our community, please visit our Legislative Advocacy page for current information and action alerts that make it very easy to contact your legislators. If you have any questions or would like to get more involved, please email shannon@dravetfoundation.org. We would love to hear about any ideas you have for other areas where DSF and our community can get involved.
Together, we can make a difference!
