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FARAFARA Cure FA

A Look Behind the Scenes

As a part of being a FARA Ambassador on the Leadership Team I was invited to the bi-annual FARA Board of Directors and Scientific Advisory Board Meeting this past weekend. It was an intense two days of meetings with a tight agenda covering a variety of topics relating to FARA. The FARA staff does an incredible job of coordinating everything from slides, presenters, agenda, to breakfast, lunch and fun local dinners.
I was blown away by the brilliant minds in the room. There were scientists talking about different approaches to treating FA and genetic terms that went directly over my head but it was amazing to hear such important scientific discussion. It empowered me and made me feel so happy that there are people who know exactly what needs to be done and figuring the best way to get that done. The Board also consist of businessmen. These people know drug companies, and grants, and finances. They know where to invest and get FARA on a strategic path to the cure. It was wonderful to hear all the grassroots fundraising is making such a huge impact on FARAs finances, pushing new pharmaceutical companies to get involve and new research to happen.
 
The Board Meeting was impressive. The direction and professionalism of FARA is equally impressive. My favorite part of the meeting was seeing the hearts of the members and feeling connected. Everyone there, whether a scientist, businessmen, family member of FA patient, all share a common goal of curing FA.
 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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