Discovering that you and your family have or are at risk for a rare genetic disease, such as Ataxia, in my case SCA7, can be pretty devastating. Knowing there is no cure, no approved treatments to slow the disease course, and that it is relentlessly progressive can feel overwhelming and frustrating. So you ask yourself, what can I do to make a difference for myself and others in the community? I have found that being an advocate and supporting Hill Day is one very satisfying way to let my voice be heard.
Bridget's Advocacy for Ataxia
I participated in Hill Day 2022. It was important to me because it allowed me to share my very real story with legislators who can influence how funding and research money are spent. Bringing a real face and voice to a rare disease helps people, such as lawmakers, realize that these issues impact the lives of their constituents and that ensuring dollars are allocated to research and the quest for a cure is very important to our community!
Participating in Hill Day was easy and actually kind of fun! Lori and Andrew provided information in advance and conducted a planning call to help make us all feel comfortable participating. We read through the material to share, and each of us told a little bit about ourselves and how Ataxia impacted us in our own words. The legislators were thoughtful and interested in hearing our stories and asking how they could help.
Impact of Advocacy
It was great to hear the update afterward and learn how research and funding dollars are being made available that can advance the search for a cure and, hopefully, someday soon, make a difference in all of our lives. I plan to participate again this year and am excited to learn more about how I can help tell our story!
We hope you join Bridget for this year’s Hill Day and help us continue advocating for Ataxia.