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FARAFARA Cure FA

A Time to Connect, Share, Learn and HOPE

The Bidichandani research lab, located at the University of Oklahoma Health Sciences Center (OU HSC) in Oklahoma City (OKC) hosted the first outing of the “OK FAers” group. This group is comprised of Oklahomans that have had a diagnosis of FA, most of whom have connected via FARA. The attending group members and their family members toured the laboratory where promising research is being accomplished to stop the progression of Friedrich’s Ataxia (FA).

OKC Lab Tour

Prior to the tour the FA families met for lunch and a chance to socialize. “The opportunity to connect is the purpose of this outing.”, explained FARA ambassador, Christin Haun. “Meeting each other, sharing experiences of FA, and learning about current research efforts fosters a sense of community and hope.” On arrival at the lab, guests were greeted by Dr. Sanjay Bidichandani who not only directs the activities of the lab, but is an active advisor and FARA supporter. Joining Dr. Bidichandani from the lab was two of his researchers, Dr. Yogesh Chutake (post-doctoral fellow) and Ms. Layne Rodden (PhD student).  

Dr. Bidichandani led the tour where he explained that the main focus of this lab is two-fold. First, identify cells within the human body that stop producing frataxin. The secondary focus is to identify the frataxin level “switch” that will increase frataxin production. Layne demonstrated how one of the laboratory machines (purchased with a FARA grant) analyzes human blood samples to develop a database that enables them to accomplish their mission. Dr. Chutake explained how that information will be shared with other researchers around the world in the form of peer-reviewed papers and sharing of the raw data. Dr. Bidichandani and his staff also answered many questions from the group on topics ranging from the current status of potential medication development, how the process works to approve these medications, the difference between gene therapy research and pharmacological research, and more.

OKC Lab Tour2After the lab tour, the entire group met in their one of conference rooms to share a cake that was brought to express thanks to the lab staff for all their hard work. As shown in the picture, the tour participants each wore apparel of one of their favorite sports teams. The theme of the afternoon was that “although we don’t all agree on our favorite sports team, we all agree that we want to beat FA”. When picking up the cake at the downtown OKC Brown’s Bakery, the manager inquired as to the meaning of the inscription they put on the cake; "Thanks for trying to cure FA." After explaining the meaning and where the cake was headed, Brown’s Bakery eagerly donated the cake…which was delicious!

Dr. B. and his staff welcome FA patients, and their families to make an appointment, and visit the lab.

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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