ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects motor neurons. Frontotemporal dementia (FTD) results from the damage to neurons in the frontal and temporal lobes of the brain. Many possible symptoms can result, including unusual behaviors, emotional problems, trouble communicating, difficulty with work, or difficulty with walking.
Daniel is not letting that stop him from living a life full with cycling and children. He's found a way to have children with his wife that do not carry the gene and has started a non-profit organization to support pre-symptomatic carriers of the ALS/FTD-causing gene. He also works for a company - Coya Therapeutics - a Houston-based clinical-stage company that develops multiple Treg-modulating therapies for neurodegenerative, autoimmune, and metabolic diseases, such as ALS. In an effort to raise funds for his non-profit organization, as well as raise awareness for pre-symptomatic carriers, he turned to his passion - cycling.
"Unbound is the ultimate challenge... the Ultimate challenge on two wheels... I found myself with the ambition, the dream, to do this race to race funds for End the Legacy." - Daniel Barvin
Unbound Gravel, formerly known as the Dirty Kanza, is an event comprising gravel racing covering various distances, from 25-mils to the 350-mile XL. The most popular distance is the marquee 200-mile race. It is held annually during the late spring in the Flint Hills region of the Great Plains around Emporia, Kansas.
Tackling the 200-mile Unbound Gravel Race is no easy matter for the top professionals in gravel, much less the other 4,000 cyclists who roll across the starting line in Emporia - and this year, 2023, would prove to be one of the more challenging editions, with long muddy stretches, heat and humidity and afternoon thunderstorms.
On the latest episode of Bike Talk with Dave, Barvin talks openly about his challenges with ALS, his hope for the future, his organization: End the Legacy, as well as his adventures with the Unbound Gravel Race.
"Walking through 4 miles of mud... everyone got blisters, I smashed my toes in my shoes, and it just sapped a great amount of energy and enthusiasm out of a lot of people. WHen we got out of the mud, everyone was so thrilled to get out of the mud, we just took off at race pace.... I was not ready for race pace!"
For more information on End the Legacy and ALS or to support his efforts: Click the links below:
Personal Twitter: @familialals
Instagram: @end_the_legacy
Bike Talk with Dave is a weekly podcast hosted by longtime Iowa cyclist Dave Mable and is available on Apple, Spotify or wherever you get your podcasts. Bike Talk with Dave is supported by listeners at
https://www.buymeacoffee.com/dmable122Q. Every episode is available for streaming on your computer or device at
www.biketalk.bike
BIKEIOWA.com is the online host of Bike Talk with Dave. BIKEIOWA.com has an extensive ride calendar where event directors can upload their event information and be included on the calendar for free. Just create an account and upload your information. It's easy to edit to keep your information current, as well as replicate and modify for weekly, monthly or annual events.
One race on that calendar is the core4, a four-surface ride in and around Iowa City featuring gravel, pavement, level-B roads and single track. Join the fun on August 19, 2023 at
www.core4.bike