BOARDMAN, Ohio (WKBN) – The Ice Bucket Challenge of 2014 raised millions of dollars for ALS, also known as Lou Gehrig’s Disease, and started a national conversation about the neurodegenerative disease.
“People didn’t talk about ALS prior to Ice Bucket Challenge, and all of a sudden everyone was,” said Mary Wheelock, Executive Director of the ALS Association, Northern Ohio Chapter.
Wheelock said the Youngstown Walk to Defeat ALS saw a major increase in participants and the amount of money raised.
“We went from $24,000 in 2013 to almost $68,000 in 2014,” Wheelock said.
The ALS Association Northern Ohio Chapter said 100 percent of the money stays in the Mahoning Valley. It also talked about how money is helping families with ALS.
“We’ve also launched a grant program, and we’re very excited about,” she said. “Giving funds directly to families to cover the costs of medically necessary expenses related to ALS, and these are things not typically covered by insurance and that’s up to $500 per quarter.”
The local chapter said 25 people in our region have ALS, but research estimates that number is actually 51. There are few things a patient has to do to be eligible for the grant money.
“They need to be registered as a patient with ALS Association, and there’s paperwork to confirm the diagnosis, ” said Wheelock. “Once they’re registered with the chapter they’re eligible to receive funds.”
Wheelock said a new resources is going to be available next Tuesday in the Mahoning Valley for patients and families with an ALS diagnosis, a care services coordinator.
“She will be doing home visits,” said Wheelock. “She will help administer programs.”
The care services coordinator is a position the Northern Ohio Chapter said it always wanted to have. When it implemented its strategic plan in 2014, before the Ice Bucket Challenge happened, the coordinator was going to be a part-time job and not happen until 2017. Now the position is full-time with benefits.
“We will now have someone within an hour of every patient in our region,” she said.
May is ALS Awareness Month. On Friday,former Boardman teacher and coach Christine Terlesky talked to students at Austintown Middle School about living with ALS.
She talked about her experience from being in denial when she was first diagnosed, to becoming a stronger person by having to adapt to a different way of life. The students at Austintown Middle School have raised nearly $1,000 to help fight the disease.
“You know, they are doing what you want school districts to do, which is give community support and teach kids that there are things bigger than themselves. They have done a tremendous job with it,” Terlesky said.
She said it’s difficult to do daily tasks that she had no problem doing two years ago. She was a teacher for 19 years before she was diagnosed with the disease.
The ALS Association, Northern Ohio Chapter, said awareness about ALS has not faded since last summer, and while it raised a lot of money and awareness, there’s still more work to be done. There’s no known cause or treatment for ALS.
Teams already are registered for this year’s Youngstown Walk to Defeat ALS. It’s Aug. 23 at Eastwood Field at 11 a.m.