Birthday Bash, Sept. 30 at Q, benefits Dylan McDonnell; has rare FA disease

By Cathy DeDe, Chronicle Managing Editor

Dylan McDonnell isn’t altogether at ease with the Birthday Bash fund-raiser set for Friday, Sept. 30, 5 to 10 p.m. in the Queen’s Ballroom at the Queensbury Hotel, marking his 45th birthday.

Dylan, Glens Falls High School Class of 1995, was diagnosed at age 19 with the debilitating disease Friedreich’s Ataxia.

For 10 years, 2007-2017, Dylan, his family and friends organized a benefit for FARA, which raises awareness and research funds for Friedreich’s Ataxia.

This year the benefit is for Dylan himself. “I don’t love that, and I don’t want people to think I don’t still support FARA,” Dylan tells The Chronicle.

He said his friends and co-organizers Jeremy Carner and Eric Hammel persuaded him to do the personal fund-raiser. Dylan recently received a used handicapped van “from a very generous friend,” but needs help with expenses.

“I can scratch enough for gas,” Dylan says, “and try to tighten my belt for a new muffler, but everything handicapped is just so much more expensive.”

The Sept. 30 family-friendly Birthday Bash will feature local bands The East End Boys, Margo Macero, Dirt Cheap, The Brain Darts Duo, and Bobby Dick. Cost: $10, kids free.

Also: Cash bar, complimentary food, silent auction, 50-50, and “a really great basket raffle,” Dylan says.

This week, Saturday, Sept. 17, The Bullpen in Glens Falls also hosts a pre-party fund-raiser from 4 to 6 p.m. “They’re like family,” Dylan said. “Grateful Den hosted an event also on Sept. 2.”

•Funds raised will be held in trust for these and other expenses not covered by insurance. “I get Medicare and Medicaid and it’s really good,” Dylan says.

“I want to say, it’s not like I reached a break with FARA. I still work with them. I’m still a Patient Ambassador and do peer counseling and rare disease awareness volunteer work.”

Friends continue to do organized hikes and donate golf tournament proceeds toward FARA. “It’s not just about me.”

“It was so much easier asking for help when it wasn’t for me directly. It’s an emotional thing. I would rather just have a job, but you know how that goes.”

Dylan has assistance five days a week, with personal chores. “My dad (musician Dave McDonnell), he’s 74, so the less I can ask of him the better.

His brother Derek moved home from Florida when Dylan was diagnosed. “He’s going to be dealing with this for the rest of his life, and I wanted to offer as much help as I can,” Derek said. “It’s been that way since then. It’s a very good feeling to be able to help.”

Dylan says, “I’m lucky I have a lot of friends. I know a lot of people with the same disease who you see close down. They are self-conscious. I don’t like how my voice sounds. I don’t like a lot, but you have to fake your smile sometimes.”

“I’m fortunate, my symptoms are middle of the road. There are some shortcomings and obstacles, but I like to see the positive.”

He counsels children diagnosed with Friedreich’s Ataxia, and their families. “If they can see me, a much older person, and I am okay, maybe that helps.”

Copyright © 2022 Lone Oak Publishing Co., Inc. All Rights Reserved