Research funding is in jeopardy, critical public health agencies are experiencing major cuts, and regulatory policies are swiftly changing. The decisions being made right now—both in D.C. and in state legislatures—could shape the future of research, treatments, and access to care for years to come. You may wonder…what can I do about all of this? Let us show you an easy and effective advocacy tool that you may not know you even have access to!
Remember when you first heard the words “Friedreich’s ataxia?” It is likely you had no idea what that was or what that diagnosis fully meant. Legislators and the public are no different; they need to be educated on the condition and the implications for the patient and their family. One simple and meaningful way to raise awareness of FA is by submitting a proclamation request to your state or local government. A proclamation is an official declaration issued and signed by a person of authority—usually a governor, mayor, or other elected official—that recognizes a certain group of people or organization in your community. They are most often used to highlight various awareness days, weeks, and months. And, the best part, anyone can submit a proclamation request! That’s why proclamations are such a powerful advocacy tool. In just a few minutes, you can help your city, county, or state officially recognize awareness days that impact the community, such as Rare Disease Day or FA Awareness Day.
To help you with your advocacy, FARA has created a Proclamation Toolkit that explains in detail what a proclamation is, how to submit one, your state’s rules and submission guidelines, draft language for your proclamation, and general advice. International Ataxia Awareness Day is on September 25, 2025, and provides a great opportunity to submit your first request. Proclamation request deadlines are quickly approaching for that date, so check out the toolkit today!
Please feel free to reach out to FARA’s Advocacy Program Coordinator, Emma Potter, at emma.potter@curefa.org with any questions or concerns about the toolkit or submitting a proclamation.