Accept Cookies?
Provided by OpenGlobal E-commerce

Please wait while your page loads ...

FARAFARA Cure FA

Louisiana Screenings of 'The Ataxian'

All around, as far as you can see is flat - green fields and trees dot the distant horizon in all directions. The humidity hugs us all inescapably in its uncomfortable, hot, sticky, unwelcome embrace, like that one aunt at Thanksgiving. Kyle Bryant champions the theater screen as somewhere nearby an alligator sniffs the air and dives back into the brown waters of a bayou. The Ataxian has indeed been screened for the first time in Louisiana.

There were two showings in the state of Mardi Gras parades and boiled crawfish.

Rachel Walker describes the screening in North Louisiana:

The Ataxian opened to a full house at Ruston's Celebrity Theater on Saturday, October 19. We were fortunate to raise over $4,500 and increase awareness with a large audience.

Our efforts to publicize the documentary were given a huge boost by Mayor Ronny Walker (no relation to the Walker family!). Upon learning about FA and the film, Mayor Walker invited us to participate in his weekly radio program. Rick Godley, on-air personality of The Peach 99.3, became another instant member of the FAmily, as he made 2 additional radio broadcasts available to our family. Kyle Bryant also participated in a broadcast on the morning of the screening. 

We were so happy to have several families in attendance who are personally affected by FA. Some of those include Karen Bartek-Maxwell, sister of Ron Bartek, and the Fitzhugh family. The Fitzhughs have a niece who has FA, and they participate in rideAtaxia Dallas every year. It is always a special time when those of us connected by FA are able to spend time together. 

We have received so much positive feedback from the event. Everyone had different favorite moments from the film, but they all walked away feeling inspired. Sean talking about his dad and Kyle sitting with the children who came out to support the team were moments that the audience will not soon forget. Kyle was on hand before the show to greet and visit with those who came to the screening. After the film, he answered many insightful questions from the audience. His answers educated the audience about FA, FARA, current research and findings, and ways to support the efforts to cure FA.

We were incredibly moved by the response we received from our community, and we feel so lucky to have had this opportunity. As our family has felt challenged in so many ways since Kate’s diagnosis, Jason reminded the audience before the beginning of the film “that great things rarely happen inside your comfort zone.” We are fortunate to live in a city with a big heart and with lots of energetic volunteers who indicated that they are ready and willing to work to support our family and FARA.

Rachel Walker lives in Ruston, Louisiana, with her husband Jason and with their incredible daughter who has FA, Kate.

Further south, the next night, the film was screened in Lafayette, Louisiana to a crowd of over 100 people. The rented theater filled nicely as the film was played, and afterward Kyle Bryant held a Q&A session. There was scarcely a dry eye in the theater, and everyone left the movie inspired. We were able to raise over $1,400 towards FA research!

LouisianaAtaxianA local new station shared about my awareness/fundraising efforts and the screening. View it HERE. Thank you, KLFY 10 News!

The best part of this screening for me was the connection I felt with others and with the entire FA community - a number of families that have been affected by FA showed up, including one family who had never reached out to anyone in the FA community before. It was a privilege to introduce them to FARA and to welcome them into the FAmily.

Following the movie, we were also able to have a lot of fun for the rest of the trip. Kyle ate crawfish fettuccine, boudin, and even cracklins, and he drank Abita Andygator, all local favorites. We will make a Cajun out of him yet!

Overall, both of the screenings in Louisiana were hugely successful. The strong support from our community in Louisiana was on full display this weekend. The Walkers and I want to thank FARA and Kyle Bryant for helping us with the awesome outreach we were able to do this weekend.


Matt Lafleur is an FA Ambassador living in Opelousas, Louisiana. Check out his FARA Ambassador profile here.

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.

 

More articles from this author

SHARE

FacebookTwitterLinkedinShare on Google+
Science B.jpg

 

Archived in
  the Ambassador Blog