Written by FARA ambassadors Brendan Halverson, Seth Holm, and Brittany Sommerfield
On June 8, 2024, the Gehr family hosted its 7th annual Cure FA Soirée in Edmond, Oklahoma. A whopping $481,000 was raised for FARA for research! The event welcomed over 300 guests, including 32 FAers and 34 FA families from 14 states and 3 countries. Now, with this total, the FA Oklahoma community has raised over 1.5 million since 2018!
It was an amazing weekend, I am so happy I could travel from Canada to attend this event. Everyone went above and beyond to accommodate each and every guest (myself included).
Community building took a win as did fundraising. Many activities including multiple social gatherings and a Pharma meet and greet were held. The main event, the soirée, was filled with great food and absolutely fabulous musical artists!
“The other guys miss playing sports. They yearn to do that again. I don’t. I miss singing. I miss sounding good. I miss harmonizing. I miss being able to contribute to family sing-alongs. I miss being able to carry a tune other than in my head. I miss not hating the sound of my voice. Many FAers work out, and some play adaptive sports. How can I adapt to losing this ability that I love?
I don’t know. I thought about the process of trying to give an answer here, and I’ll give some of one, but I’d like to note that I think it’s incomplete; I don’t think I’ll ever really fully adapt to what I’ve lost.
With that said, let’s get to it: this. Let’s get together, let’s put on and listen to some amazing performances and music, and let’s raise as much money as we can for an organization fighting to gain back what’s been lost at the hands of Friedreich’s Ataxia. Let’s make a world where nobody has to lose what I’ve—what we’ve—lost.”
–Michael Gehr
The whole weekend went beyond my expectations and I can’t thank everyone enough, I hope to attend again one day!
– Brittany
I attended the Cure FA Soirée in Edmond, Oklahoma on June 8, 2024. This was my 3rd year (in a row) attending. I attended with my mom as we drove all the way down from Michigan! The drive is about 14 hours each way, but I think it is more than worth it.
One of the reasons it’s so special to me is because the event is spread across an entire weekend. My favorite part is being able to see and talk to FAmily, most of whom I have not seen since last year or at all even. I talk to FAers all year over the phone, but this event brings the opportunity to talk and have fun in person.
I arrived in Edmond Thursday night and immediately met and talked with some FAers at the hotel over dinner and drinks.
Friday we all met up for lunch at a sandwich shop. The food was great and the restaurant was packed with FAmily. After lunch, we all toured the Cowboy Museum together and ended the night at an Oklahoma City baseball game.
On Saturday we all got together at the hotel for a brunch and meet-and-greet with pharmaceutical researchers, sponsors, and representatives of companies for FA clinical trials. After that, I met up and talked and played cards with my FAmily. The Soirée was later that night at the hotel that welcomed hundreds of people. The Soirée is a fundraising event with live performers, a silent auction, a wine pull, and a bonding opportunity. There were professional photographers to capture the night and amazing food provided by Outback Steakhouse.
On Sunday we all got together for one last brunch at the hotel where we said our goodbyes before heading home.
I had a wonderful time at the Cure FA Soirée and am already looking forward to next year!
– Brendan
The Cure FA Soiree 2024 was mine and my sister, Mekayla’s, first time experiencing this event. Our good buddy, Kyle, had extra tickets and invited us to go with his family. Planning ran pretty last minute, and though we had seen videos of the event from years past, we didn’t really know what to expect. Well, it was an incredible and unforgettable experience!
The Gehr family has taken a serious commitment to making sure everyone arrives safely, lodgings are comfortable, and everyone is able to participate in all the events they’ve coordinated throughout the weekend.
Now, the Soiree itself was magical. Dinner was awesome, the music was amazing (like seriously some of the best singers and instrumentalists I’ve had the pleasure of listening to!) The speeches and documentaries were well-written, on a few there wasn’t a dry eye in the whole ballroom.
Thank you so much to all who help put this on each year, especially the Gehrs! You’ve brought together such an amazing group of people, raised so much to further FA research, and touched the hearts of patients and families all over the world.
– Seth
For more information about the Cure FA Soirée visit www.curefasoiree.org.
