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FARAFARA Cure FA

Invite and They Just Might Come!

The FA community rocks when it comes to fundraising to support research. The rideAtaxia program, Energy Ball and grassroots community events have made it possible for several clinical trials to be currently underway. Those amazing fundraising efforts also offer another incredible benefit, the opportunity to build relationships with elected officials throughout the country.

Elected officials are there to support their constituents. If you have a question about a government program, need help resolving a problem with a public agency, or would like to voice your opinion on legislation, your representative wants to hear from you. But, they also have a real interest in getting to know the community they serve as well as the constituents within it. So, if invited, they just might come!

The rideAtaxia program provided a wonderful platform to begin this type of outreach. For each of the 2018 rideAtaxia events, FARA invited three federal officials (two Senators & the House of Representative member) and three state officials (State Senator, the State Representative, and the Mayor) who represented the area the ride was being held in. The invitations opened a dialog with many legislative offices about FA and, as you can see in the above photo, succeeded in gaining support from others.

You can help increase the success of this initiative! The next time you are holding an event, email your elected officials and invite them. Not sure who your officials are, enter your home address here for a complete list. Elected officials are busy people so best to offer them a specific job at a set time (opportunity to speak, cutting a ribbon, giving an award, etc.) Finally, some offices are better than others at replying so if you don't get a response, follow up with a call.

Most of all, do not be discouraged if they cannot attend. Making the outreach to their office exposes the staff to FA and the FARA organization. It is a wonderful opportunity to educate and create awareness. And, if a time comes in the future that we need to approach them to support a program or proposed bill, they will have a better understanding of why that particular ask is important to our community.

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