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FARAFARA Cure FA

Cure FA Soirée: React with Music

CureFA Soiree 1The super amazing and fun ‘Cure FA Soirée: React with Music’ was a benefit for FARA featuring musical performances of friends & local talents Renee Anderson, Whiskey and Pie, and Jamie Bramble; plus updates from Michael Gehr, Kyle Bryant, Dr. Angel Martin & Dr. Sanjay Bidichandani (who was part of the team that discovered the FA gene in ‘96).  It was held on April 14th, 2018 in Edmond, Oklahoma, and it was put together by Michael Gehr and his parents: Eric & Liz. I had the pleasure of being a part of this event with the special invite from the Gehr family. I drove over to Edmond from St. Louis with relatives of the Gehr’s. We arrived Friday the 13th, and had non- stop fun until we left Sunday the 15th. I enjoyed dinner and a downtown exploration with the Gehr’s Friday, met new faces before and during the event on Saturday and concluded with an intimate brunch with some participants of the Soirée on Sunday.

The theme of the Soirée was ‘React with Music’, which comes from the tagline of The Ataxian documentary, “Life is About how We React.”  Michael and his family are all singers, and all have a great love of music. In school, Michael has always enjoyed singing, and he has participated in choir, musicals & talent shows since 3rd grade. Many of his closest friends are involved in Heritage Hall Performing Arts. (Heritage Hall is a college prep school Michael has attended since preschool.) “It was wonderful to hear performances of many of Michael’s friends from school, and a high point of the evening was Michael’s mostly solo performance of the song ‘Creep’, with backup from the school choir.” - Liz Gehr 

Here’s an excerpt from his speech before that song:

“Life requires that we do things that are difficult. But, the most difficult things seem to be the most rewarding. That’s why I still sing. That’s why I react with music. ‘Creep’ is commonly seen as a sad song, but I don’t see it that way. I’ll be singing this largely as a solo, representing how Friedreich’s Ataxia makes me feel, alone. Then the choir will join in to represent what the people who feel alone can do together.“ - Michael Gehr

CureFA Soiree 2I have a “memorable moment” from the Soirée, but first I’d like to highlight how polite and well mannered the teenagers of Michael’s high school were. The ones I had the pleasure of formally meeting, made sure to come up to me, shake my hand, introduce, and even throw in some history about themselves. I was blown away by the politeness of these young individuals and happy to have met and witness them onstage showing the crowd their talent.

My favorite was witnessing the love and motivation the community had to support Michael and other FAmilies. The Soirée came in hot raising $62,200 to find a treatment/cure for Friedreichs Ataxia.

I hope this type of fundraiser becomes an ongoing event or maybe it won’t need to because a treatment has been found.

I know I can speak for most when I say- We appreciate your donations in helping researchers finding a treatment for FA. Together we will, #curefa!

ErinPieper sig 16

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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