Here, at The MSA Coalition, we are proud to have a community of passionate members who are dedicated to doing whatever they can to support our mission and improve the lives of patients diagnosed with Multiple System Atrophy (MSA).
Because this disease is so rare, many people are not aware of MSA, including many healthcare professionals, making diagnosis and treatment a significant challenge. Despite these challenges, members of our community take the initiative to spread awareness of MSA and fundraise in support of education and research surrounding this disease. We consider these members as true champions of MSA.
Austin Urban is one of these champions.
Austin is a real estate professional in New York state and is close with his parents Jon and Kim, who own and operate The Copake Country Club and Greens Restaurant in Craryville, NY. Austin is a fitness enthusiast who enjoys golfing, snowboarding, and other similar activities taking after his father Jon, who was a collegiate athlete back in the ‘80s and an avid runner of half and full marathons for most of his life.
It was the day after Thanksgiving in 2019, and the Urban family was cleaning up their home after a Thanksgiving celebration they hosted for extended family and friends. As evening approached, they decided to have dinner at their favorite restaurant across the street from their home. It wasn’t until they returned home that night that they received the news. Austin’s father Jon had been diagnosed with MSA.
Austin describes his father as the life of the party but also the hardest working guy in the room. Jon is always up before sunrise and stays at work long after everyone else has gone home for the day. He loves to host friends and family, always making sure others have an amazing time in his presence. In his over 35-year career, Jon has owned a variety of businesses and has employed over 1500 people. If you need a favor, Jon is always there to help, letting his friends and family tap into his resources for whatever is needed. If you had a fundraiser, Jon was always donating money or products to help you reach your goals and execute a perfect event.
Jon was 59 years old at the time of his diagnosis and had been experiencing symptoms for about a year and a half. Due to the rarity of the disease, he was misdiagnosed with a variety of different diseases just as many patients are who have MSA. The Urban family was left wondering what they were dealing with as doctors struggled to pinpoint the cause of Jon’s symptoms.
After the official diagnosis, Austin was able to connect with our organizational experts and resources to assist with any questions and concerns.
“The news was awful, but The MSA Coalition has helped many times and is right here when you have questions,” Austin shares.
Despite the diagnosis, Austin’s penchant for hard work and staying active would inspire his fundraising initiatives for the Coalition on behalf of his father. In the years since his father’s diagnosis, Austin has organized many charity runs raising over $100,000 for The MSA Coalition in support of patients and care partners impacted by MSA. In Austin’s first year of the run, he was the sole runner and raised $15,000. By the second year, he recruited 15 runners who raised $70,000 overall.
The Miles for MSA 100-mile running challenge occurs in May, where donations are made per mile ran. After every run, the total number of miles and donations are compiled, and the month ends with an open invite to the “Final Mile” party held on May 31st to celebrate runner and donor achievements.
In 2022, the Miles for MSA event will feature a new component, a 300-mile bike ride, allowing more people the opportunity to participate who are unable to run. If you are interested in joining the 2022 Miles for MSA charity run and bike ride, call, text, or email Austin Urban at 845-891-1770 or firstname.lastname@example.org.
We are so thankful to have the support of Austin, his family, and his community. The impact he has made through Miles for MSA will go a long way in understanding, diagnosing, treating, and, one day, curing this disease.
Thank you, Austin Urban, and all the runners and donors of the Miles for MSA community!