I am hiking the Grand Canyon, Rim to Rim on October 18 to raise awareness about ataxia and support the National Ataxia Foundation (NAF). I was diagnosed with spinocerebellar ataxia (SCA) a rare neurodegenerative disorder. Ataxia, which comes in many forms, is a degenerative disease of the cerebellum. Both my mother and her brother had ataxia. Symptoms of SCA27b; our strain of ataxia, can include an unsteady gait, imbalance, bouncy vision, and reduced hand eye coordination. The gene causing SCA27b, was identified 3 years ago, thanks in part to support from the NAF.
Last year at the NAF conference, I was able to meet three researchers who identified the SCA27b gene, definitely my version of meeting rock stars. When my mother was diagnosed, the only treatment available was “don’t fall”. Now there is an FDA approved drug for Friedreich’s ataxia and 5 drugs in the FDA pipeline, including a drug for SCA27b. Stem cell lines are being developed and genetic research undertaken that will further open treatment options. NAF provides critical support for this research and crucial dissemination of this information. Through NAF, I have developed friendships with others living with ataxia, hailing from all over the world. Research, knowledge and community provide hope.
So why the Grand Canyon? I have always loved to hike and had been brainstorming about an epic adventure to tackle, while I am still physically able. I learned of the Grand Canyon hike and realized I had found my challenge. While deeply saddened by the fire destruction on the North Rim, I am relieved our adventure will continue. Our new route is South Rim to the Colorado River and back up.
I am grateful for any support you can provide so this important work can continue. Thank you.