New Mexico event also commemorates Bataan Death March
By Ashley M. Casey
Associate Editor
Marc Alessi has never run a marathon, but on March 15, he will hike 26.2 miles in the desert of New Mexico.
The Liverpool High School graduate — now a grad student at Cornell University — has a two-fold purpose in this endeavor. He will be raising money for the National Ataxia Foundation and paying tribute to the thousands of Filipino and American prisoners of war who were forced to trudge through the jungles of the Philippines in the Bataan Death March in 1942.
The two causes came together when two people with ataxia — Mike De Rosa and Ed Brand — decided to tackle the Bataan Memorial Death March. Joint Mission Bataan to Cure Ataxia’s goal is to raise $200,000 for the NAF. At press time, the campaign had raised about $190,000.
Ataxia — a degenerative disease of the nervous system characterized by lack of coordination and difficulty walking, eating or speaking — hits home for Marc Alessi. His father, Dave, passed away in 2011 after a 13-year battle with spinocerebellar ataxia type 2.
“He was the most supportive person you could possibly ask for,” Marc told the Star-Review in 2013. “Every single concert I had, he was there, every single swim meet I had, he was there, every other event I was involved in, he was there. I miss the times when I could look up and see my dad smiling, so proud of me. And really it was things like that that kept me going through my childhood. I never realized what I had until he was gone.”
The disease is genetic; Marc and his brothers had a 50% chance of developing SCA2. His younger brother, Alex, was diagnosed with SCA2 six years ago.
“I was actually tested a year ago and it came back negative, so that was sort of big because I just accepted I would develop it,” Marc said.
When Marc was a junior in high school, he and a classmate, Leah Dixon, organized the Walk for Dave as a health class project. The Alessi family went on to hold four more Walks for Dave.
“We raised $35,000 for the Ataxia Foundation through those five walks,” Marc said.
The last Walk for Dave was in 2017. Marc and his brothers are grown now, and Marc is busy with grad school at Cornell.
“I wish I could have done the walk more. Now I’m actually trying to raise funds to get research to the point where we can get a treatment for my brother,” he said.
Marc comes home on the weekends to spend time with his mom, Terri, and his younger brother, Alex. He said Alex is doing well and is undergoing screening to enter a drug trial to treat his ataxia.
“My whole life my dad was in a wheelchair or using a walker so I kind of only knew him that way,” Marc said. “My younger brother and I were best friends growing up.”
In preparation for the grueling 26.2-mile march, which takes place at the White Sands Missile Base in New Mexico, Marc has been going on increasingly long hikes.
“It’s a little scary because it’s super high elevation and it’s very dry,” he said.
The memorial march is a little more than a third of the distance of the real Bataan Death March, which was later deemed a Japanese war crime. In April 1942, the Imperial Japanese Army forced Filipino and American soldiers to march roughly 65 miles to prison camps after the months-long Battle of Bataan. Thousands of prisoners of war died on the march, not just from exposure and illness but from being beaten, tortured and shot.
Marc said the march is an opportunity to honor veterans as well as raise money for the National Ataxia Foundation.
“Every small donation helps too. It’s affecting lives across America,” he said.
To donate to Marc Alessi’s campaign, visit app.mobilecause.com/vf/JMB/MarcAlessi. To learn more about ataxia and the NAF, visit ataxia.org.
