There are plenty of causes that are important to help out with, but one of my goals in life is to Cure FA. While I can’t be the one to concoct the right combo of meds in the lab, I can at least spread the word about this disease by telling you about Kyle Bryant.
I met this wonderful man a few years ago and it changed my outlook on life. Friedreich’s Ataxia is a degenerative disease that has no cure. As he explains in his TedX Talk Kyle is not guaranteed any amount of time to live. Doctors say his muscles will slowly stop working but Kyle is a fighter! Kyle has outlasted his diagnosis and when I met him he was about to ride his bike across the country as part of RAAM. I covered a story on him for the news in Sacramento. He was really great about keeping in touch with me along the way so we soon became good buddies. In fact, when I was looking for a new apartment Kyle offered his home to me. He was moving to Philly to be one of the leaders in the fight against FA so he was renting out his home in Sacramento. Kyle soon became my landlord! It is really rare and special that someone I cover a story on becomes a close friend but if you ever have the pleasure of meeting Kyle, you’ll soon see why it’s so easy to be drawn to him. He literally treats every single day as a GIFT. That’s because with FA, every day IS a gift. He also has no choice but to fight to stay alive which means that he actually values every opportunity that he is living. It’s pretty amazing to hear him speak. So I try to take part in as many fundraisers as I can for him. I’m hoping my website will be a good way to raise some money so we can cure this once and for all!
AND this just in… Kyle and Sean Baumstark (another gift to this world who I’ve had the pleasure of meeting) are featured in a documentary called The Ataxian. The trailer alone is super emotional, so join us in supporting their film. It’s been 5 years in the making. You can find details on their premier on The Ataxian Movie website, see ya in Hollywood! www.theataxianmovie.com
Here’s the story that aired in Sacramento: