Welcome to ZoŽ Altenberg's Page
My boyfriend Zack and his sister Kelly Hennessy both have Friedreich’s ataxia (FA), a debilitating, life shortening neuromuscular disease. Zack is in a wheelchair and Kelly uses a walker. Growing up I spent a lot of time skiing, hiking, biking, and swimming and have grown a passion for outdoor sports. Zack grew up playing lots of sports and spending lots of time outside as well but now has to rely on the gym for all his exercise. This past Decemeber Zack tried sit-skiing for the first time and it was so much fun to get to share one of my passions with him. I hope we can get him on a hand-trike someday soon and try other adaptive sports. However, adaptive sports are not cheap and I know how much he'd love to be able to have me teach him to ski on his feet one day. So on June 10th, I'll be riding with local FA families, friends and cycling enthusiasts to help raise awareness and money for FA research.
I'd love for you join me either by participating, donating or just taking a little time to increase your awareness and learn about FA and some of the research that is being done that has real near-term potential. For example, Dr. Sanjay Bidichandani's lab at The University of Oklahoma College of Medicine is investigating the mechanism of epigenetic silencing of the FXN gene seen in patients with Friedreich's ataxia. Other research has shown complete reversal of FA symptons in mouse models. There's lots of hope for a cure, we just need to raise awareness and funds to push the research and drug trials along.
rideATAXIA was founded by Kyle Bryant, a young man with FA. Kyle redefined what was possible in his life when he took up recumbent cycling. He says after training for and completing his first century ride, "I can't even walk down the street, but I rode 100 miles in a day. After that the sky was the limit." Since 2007, rideATAXIA has raised over $5 million to fund FA research progress.
Join me in supporting the urgent pace of that research. Join my team, donate, or just learn. Together we will cure FA!
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