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FARAFARA Cure FA

"Brunch and Learn" at Reata Pharma

THE REATA EXPERIENCE

Reata Pharmaceuticals, in Irving, TX, invited an FA patient panel to speak about our histories and experience living with FA. FARA has partnered with Reata to develop a drug therapy in the treatment of FA. On April 7, 2016, Reata hosted a “Brunch and Learn” to educate all employees about FA by putting a face to the disease.

The conference room in the Reata offices was full; around 50 employees and four speakers on the panel participated in the event. I believe the collective stories of the patient panel were effective in relating the gravity of FA, and the need for a cure. As the meeting concluded, a company statistician introduced herself, and told me that after hearing our stories, “It makes me want to work harder”. I grinned from ear to ear.

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Reata’s hard work and dedication are appreciated, and that I am really rooting for them! Knowing about research progress is so encouraging—and how cool is it to know that helping bring about a cure for FA will dramatically change so many lives!!

*Reata has initiated the MOXIe study, a placebo-controlled, multi-center Phase 2 study of RTA 408 in Friedreich’s ataxia. (reatapharma.com)

 

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I have avoided public speaking my entire life. The thought of talking in front of a group of strangers is so scary to this introvert. But, when I was asked to share my personal story of living with FA with the employees at Reata Pharmaceutical, I knew I had to do it.

All of the employees at Reata came to listen to us. Jen Farmer began by giving them an introduction to FA and FARA. Then, it was on to the patient panel. Of course, Jen picked on me to go first! The room got really quiet as I spoke. So quiet I could hear my voice shake. When I looked around, everyone was watching and listening to me. When I finished, the employees continued to be engaged in the stories of the other 3 panelists.

When we were all done, there was time for questions. Several people had a question, but before asking, they all thanked us for coming and sharing our story. Most of them had never met anyone with FA. Many people told us they had a new inspiration to find a cure.

I'm glad I pushed myself to speak. We helped to put a face to this disease.

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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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