The Advocates for LGS team is a small but dedicated group of caregivers who recognize the need for change at the systems level to provide a brighter future for their loved one with LGS.
Every August during the congressional summer recess, the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program coordinates local visits with our representatives when they are back in their home states.
This past August, several of our advocates participated in this event. I also participated in my home state of California. RDLA offered training and provided several asks; however, we were also welcome to include an ‘ask’ that isn’t part of that recommended list if it was relevant to the rare disease community.
This year, 425 advocates from 49 states and D.C. attended 242 congressional meetings. I was able to meet virtually with my two Senators and in person with my Congressman’s staff member, Amisha DeYoung. I decided to make my own ask for my members to join the recently formed Congressional Epilepsy Caucus. This Caucus will focus on raising awareness in Congress on the many types of epilepsy and the many needs of our community among other things.
The other recommended asks were:
- The Accelerating Kids Access to Care Act (HR. 4758/S. 2372)
- The Creating Hope Reauthorization Act (HR. 7384/S. 4583)
- The HELP Copays Act
These pieces of legislation were addressed by others in our Senate meetings. I discussed the recommended asks and the Epilepsy Caucus ask in my one-hour meeting with Amisha as I was the only attendee. It was such a supportive meeting, I felt heard. Amisha immediately followed up with her D.C. co-workers and got back to me to let me know that my Congressman, Salud Carbajal, would be joining the Caucus. In addition, they wanted to let me know that he would support HR 7384 and would vote yes on HR 4758. I was overjoyed. Advocacy in action!
When I reached out to my fellow advocates for feedback on their meetings, I received the following from Kurt Oberhausen: During Rare Across America, I had the privilege of speaking with Senator Hassan’s office, Senator Shaheen’s office, and Congressman Pappas. Sharing what life is like for those living with LGS offered these policymakers a perspective they may not have fully been aware of beforehand. For example, when I mentioned that Addison has experienced over a thousand seizures so far this year—a reality that is normal for our family and community—it brought a sense of shock to the conversation. This reaction helped open discussions around the critical need for better treatments, therapies and care. Congressman Pappas committed to supporting HR 7384, the Creating Hope Reauthorization Act, which extends the Rare Pediatric Disease Priority Review Voucher (PRV) program for six years to continue driving innovation in pediatric drug development.
I’m also thrilled to report that Kurt’s Senator, Maggie Hassan, has joined the Epilepsy Caucus.
Successes like mine and Kurt’s fill me with hope for the epilepsy and rare disease communities. But we can’t have these experiences if we don’t participate and share our stories. The power of my story and all of our stories is a reminder that nothing will happen unless we stand up and bravely announce to the lawmakers that our loved ones deserve more. Indeed, they deserve everything. They deserve a better future where they’re safe, loved, and given the best resources to thrive. And they deserve CURES that can only come about through heavily funded research.
If you’re not yet part of our Advocates for LGS Team, please know that there is power in numbers and we need you!
If you’re interested in attending Rare Disease Week on Capitol Hill in February of 2025, the EveryLife Foundation travel reimbursement application portal will be open from September 23 – November 8, 2024. Join us and share your LGS story!
-Written by; Jennifer Griffin, LGS Foundation Director of Family Support
Interested in advocating for LGS? Join our Advocates for LGS team today!
Updated 11/19/24 (KK)