The Importance of Community
When I received a phone call from a kid in Oklahoma, who wanted to organize a screening of "The Ataxian", I had no idea how it would turn out. Many times I talk to people about a proposed screening or other event, and they realize how much work it is going to be and they opt to take a pass. What I didn't know then about Michael Gehr is that he is a very driven and competent young man with an amazing family and strong community support backing him up.
When I was diagnosed with FA, I heard the same things that many of us hear. You have a rare disease that only affects 1 in 50,000 people and doesn’t have a treatment; you're gonna be in a wheelchair soon, and you will likely develop heart disease… In other words, life is over. Like Michael, I did have a very supportive family and community which helped to keep my head above water in those early days. Then, I met others that have FA. And I found these people to be caring and funny, driven and successful just like I wanted to be. That was a game changer for me. All of a sudden, I have friends and role models that are dealing with the same challenges I face. If they can do it, maybe I can too.
The power of community is what drives me and I can see that it does the same for Michael, the Gehr family, and their community. Michael was not put off by all the work it was going to take to put on his event. He called me back about a month later with the location, date, agenda, and an outreach plan. He even reached out to one of our top FA researchers, Dr. Sanjay Bidichandani to organize a tour of his lab at OU in conjunction with the screening. This kid from Oklahoma was legit.
So I booked a plane ticket for the screening, and since I would not be able to spend Easter weekend with my family, I decided to extend my stay with the Gehrs. The night of the screening was nothing short of amazing. The Gehrs welcomed hundreds of people to fill a huge theater and raised over $30,000 with their first event. Michael gave a powerful talk, recognizing that FA threatens his life, and reinforcing his intention to fight back as an active participant in the FA community.
On Easter Day we traveled a couple hours south to the Wichita Mountains Wildlife Refuge and I got to see what the Easter Bunny looks like in Oklahoma.
It is one thing to recognize the power of community, and it's another huge step to create community. When facing a challenging, life threatening situation like the diagnosis of Friedreich's Ataxia, individuals and families have every right to go inside, lock the door and never come out. Society would accept that as a totally reasonable response. However, when we face these challenges head-on and look to others for motivation and help, we realize that life is not over. This is just the beginning. I am looking forward to seeing YOU at the CureFA Soiree as Michael and the Gehr Family continue to build community and fund research progress.
CURE FA SOIRÉE: REACT WITH MUSIC, a musical evening for all ages to cure Friedreich's Ataxia, featuring musical performances from many friends, including fabulous local talents Renee Anderson, Whiskey and Pie, & Jamie Bramble, along with updates from Michael Gehr, Kyle Bryant, Sanjay Bidichandani, & FARA. There will be a buffet dinner & dessert with a cash bar on Saturday 14 April 2018 at 6:00 pm in the Edmond Conference Center Ballroom (Hilton Garden Inn: Covell & I-35) 2833 Conference Drive, Edmond, OK 73034. Buy tickets or make a donation at curefa.org/gehr.
