Dear Fellow FAers and Friends and Family of FAers,

I am a 47 year-old with FA. I just recently decided I needed to stop working. To bring my skills to something I am committed to on every level, I have decided to volunteer with FARA. In my professional life, I am a grant writer. So, that is what I am doing for FARA now. I am helping them find and pursue opportunities for funding from foundations, corporate and otherwise.

There are two things with which you can help us greatly in this endeavor: (1) contacts within foundations and (2) stories that are heartfelt about the difficulties and triumphs of having FA.

The first goes to the tried and true expression, “It is not what you know, but who you know.” We still have to apply to foundations and provide them with a strong application, so it doesn’t guarantee funding, but knowing someone does greatly improve the odds. I believe we should tap our relatively small (although still too big!!!), but mighty community to see if we FAers and/or loved ones have connections we can use to help open the door for FARA. Connections can be at any level of the company and do not have to be senior executives.

Please let FARA know right away if you have any friends or relatives that work for companies that have corporate foundations. Contact Juliann Green at the FARA office 484-875-3015 or at juliann.green@curefa.org. She will be help determine the best way to approach them and will keep track of all relationships and conversations. Please keep in mind, it is important to talk with Juliann first, before approaching any foundation.

Regarding the second, part of every good grant application is to tell the story of why curing FA matters—how and who does FA affect. The best way to do this is through our voices! We are looking for all stories, but these are of particular interest:

· What does FARA mean/give to you? (For me, it is hope.)

· For those of you who do, what does going to a FARA Collaborative Clinical Research Network site mean to you? (I see Dr. Lynch at Children’s Hospital of Philadelphia and it has truly made me much more optimistic about my future.)

· Stories from children in their own voices about living with FA

· For those who have participated in Ride Ataxia or plan to, what does this event and Kyle’s emphasis on attacking FA with exercise mean to you?

If you have a story you want to share, please email it to Juliann making sure to state that you grant FARA permission to use it in a grant application.

To quote Ron Bartek: “Acting alone there is little any of us can accomplish whereas acting together there is little we will not accomplish."

Thank you for helping FARA squash FA in whatever way you can. Please don’t hesitate to contact me at jeantw1@verizon.net if you have any questions or concerns.

Jean (Walsh)