LGS Advocates are Raising Their Voices

Written By: Jennifer Griffin, Director of Family Support

Just 6 months after we took the nation’s capital by storm for Rare Disease Week on Capitol Hill, the LGS Advocates were at it again in their local communities as part of Rare Across America, organized and hosted by the EveryLife Foundation for Rare Diseases.

This annual event takes place during the first two weeks of August when our representatives are in their home states and communities to meet with their constituents. The EveryLife Foundation provides multiple trainings and opportunities to make this as simple as possible for ALL advocates, even those who are brand new to the advocacy space.

As one of the LGS Advocates, I can testify to the ease at which this was handled in my home state of California. All we had to do was register and the EveryLife Foundation took care of everything else. They scheduled all three of my virtual meetings for me and I just had to show up. I met with the staff member for my two state Senators (Dianne Feinstein and Alex Padilla) and my Congressman, Salud Carbajal. There were three recommended “asks” from the EveryLife Foundation and we also had an additional ask of our own. I recommend that you take a closer look at these pieces of legislation as all are relevant to the LGS community.

1. Join the Rare Disease Caucus – also available in Spanish
2. Cosponsor the Safe Step Act (S. 652/H.R. 2630)
3. Cosponsor the HELP Copays Act (S. 1375/H.R. 830) – also available in Spanish
4. An additional “ASK” was made by the LGS Foundation – Join the recently established Congressional Epilepsy Caucus

I think it really needs to be emphasized that your level of participation is completely up to you. I didn’t need to speak at the meetings with our Senators. We had large groups of 20-30 attendees and usually only one person is pre-selected to speak to each issue. Tracy Dixon-Salazar, a fellow Californian and Executive Director at the LGS Foundation, took the Epilepsy Caucus request and spoke magnificently, as we all knew she would.

At my meeting with Congressman Carbajal’s office, there were only 2 of us so we could provide more personal context into all of the ‘asks’. I shared some of my son Theo’s LGS journey. This is my favorite type of advocacy because I get the opportunity to let them know more about Theo so he’s seen as a real person and not just a diagnosis. The young woman representing the Congressman even shared a personal story of her own family’s struggle with a rare disease diagnosis. When you can have those types of conversations with a representative, you’ve made the first step in creating a relationship that will endure.

In addition to the meetings that Tracy and I had in California, there were many other LGS caregiver advocates who participated in their home states. We’re steadily raising our voices! The Advocates for LGS team at the LGS Foundation was launched in 2022 and we’re growing. I’m regularly contacted by family members interested in learning how to use their own voice to effect change. The need is great. The issues will always be there, but they won’t be addressed to our satisfaction unless we participate in the conversation. We ALL have an LGS story to tell and believe me, our elected officials WANT to hear your story. They WANT to put a face/story to an issue. Everyone is welcome to join us. If you’re brand new to the advocacy process, we’ll help you learn how to take that first step.

If you’re interested, contact me at info@lgsfoundation.org and we can talk!

Updated 08/21/2023