Fourth annual event raises money, awareness for ataxia

By Sarah Hall

Editor

Dave Alessi was always there for his boys.

“The first thing that comes to mind when I think of my dad is dedication, more specifically, dedication to his three sons,” said Marc Alessi, Dave’s son. “He tried so hard to attend every event my brothers and I were involved in. He was so determined to stay involved in our lives as much as possible.”

Dave Alessi passed away Oct. 4, 2011, from a rare degenerative disease called spinocerebellar ataxia type 2. He’d been diagnosed with the condition in 1998, and though it eventually stole his ability to walk and forced him to use a wheelchair, Dave did his best to be there at every recital, game, meet and ceremony.

“I always relied on looking up to him cheering me on at a swim meet or music recital,” Marc said. “I wish I didn’t take it for granted back then, but today it’s one of my happiest memories.”

In order to carry on his father’s memory, as well as to raise awareness about the condition that ultimately claimed his father’s life, Marc Alessi, who is about to start his junior year at Cornell University, started a walk in 2013 that he’s held each year since. The fourth annual Walk for Dave will take place from 9 a.m. to noon Saturday, Aug. 6, starting from the Bay View Tent at Willow Bay at Onondaga Lake Park in Liverpool. Registration is $10 per participant. To register, visit ataxia.donorpages.com/2016WalkforDave. To volunteer or for more information please contact Marc at 506-3260 or [email protected].

According to the National Ataxia Foundation, the word “ataxia” means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a lack of coordination which can be associated with infections, injuries, other diseases or degenerative changes in the central nervous system. Ataxia is also used to denote a group of specific degenerative diseases of the nervous system called the hereditary and sporadic ataxias.

According to Marc, the previous three walks have raised more than $18,000 for the National Ataxia Foundation and helped to spread awareness about the condition.

“Ataxia is such a rare disease and many people don’t know how it affects thousands of families across America,” he said.

This year, Marc said he hopes to attract even more members of the Central New York community and to raise another $10,000 for the foundation, especially since his younger brother, Alex, was diagnosed with the disease two years ago, and, as the condition is genetic, there’s still a risk Marc or his older brother Michael could develop it.

“I am really determined to grow the walk each year, he said. “I hope that we’ll be able to help find a cure in the coming years.”

Marc said he thought his father would be proud of the walk and all it’s accomplished so far.

“He inspired me to never stop reaching a goal in the face of potential defeat,” he said. “For him, it was making sure my brothers and I were happy — which we are. For me, it’s continuing my dad’s legacy of hard work and positivity with this walk. It’s one of the most amazing feelings being able to share with the community his legacy, and I hope to continue to do so each year.”