David McDonnell of Moreau said he never takes for granted the simple acts of dressing, getting in and out of the car, or even getting food from the refrigerator after watching the struggles his 34-year-old son encounters daily.
Dylan McDonnell is afflicted with Friedreichs Ataxia, a rare, inherited disorder that affects the muscles and heart.
Structures in areas of the brain and spinal cord that control coordination, muscle movement and some sensory functions are affected and there is no cure.
Since 2008, the McDonnells have worked to raise awareness of Friedreichs Ataxia, and more than $50,000 to benefit Friedreichs Ataxia Research Alliance.
Theyre now preparing to host the fifth annual free concert on Saturday at the Elks Lodge pavilion in Queensbury.
The FARA event, featuring local bands and basket raffles, is becoming something that people pencil in on their calendars, Dylan said.
We still have to go out and ask for donations, but half the time people come up and offer, he said. Theyll ask, Whens your benefit? What can I give? What can I do?
The free concert is becoming so well known, David said, that other organizations are donating a portion of funds raised through their events to FARA. At least two benefit golf tournaments and the Adirondack Runners Club, through its Goblin Gallop, have contributed to the cause.
In addition, two friends of Dylans, Mike DelSignore and Ben Wetherby, have completed a hike up Mount Washington in New Hampshire to help and this year raised a few thousand dollars by climbing the Sierra Madres in California.
A lot of money is being raised and its sorely needed because the research is terribly expensive. Dylan said. People have been great. We couldnt do it without them.
Original post:
Free concert in Queensbury to draw attention to rare disease