The "Challenge" raised $115 million in six weeks in 2014
YOUNGSTOWN
The Amyotrophic Lateral Sclerosis Association is planning Ice Bucket Challenge 2015, the game that went viral on social media in summer 2014 and raised an unprecedented $115 million nationally during the six-week period of August through mid-September.
The association has committed 67 percent of the funds to support research, including $4 million to the Cambridge, Mass.-based ALS-TDI, for which Youngstown-based Crush ALS/Team Bannon annually rides in the three-day, 270-mile AOS-TDI Tri-State Trek bicycle ride from Boston to New York City.
Often referred to as Lou Gehrig’s Disease, ALS is a progressive neuro-degenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. Degeneration of the motor neurons in ALS eventually leads to their death, which causes the brain to lose its ability to initiate and control muscle movement.
Patients in the later stages of the disease may become paralyzed. The disease is always fatal.
In addition to research, the ALS association, not affiliated with ALS-TDI, allocated 20 percent for patient and community services helping to provide more support to people living with the disease and increasing access to multidisciplinary care at The ALS Association Certified Treatment Centers of Excellence; 9 percent to support public and professional education and encouraging Congress to expand support for ALS research and care; and 4 percent on fundraising and fees charged by vendors to process donations, said Mary Wilson Wheelock, executive director of the ALS Association Northern Ohio Chapter in Independence.
The Northern Ohio Chapter exceeded its $1 million operating budget in 2015 by more than $700,000.
“We attribute that entire excess to the Ice Bucket Challenge. All of these funds are being invested in local care programs,” Wheelock said.
The ALS Ice Bucket Challenge, used for other causes in the past, was started with a professional golfer named Chris Kennedy, who challenged his sister, Jeanette Senerchia, whose husband had ALS. Through Facebook, one of her friends was connected to Pat Quinn in Yonkers, N.Y., who was connected to Pete Frates in Boston, both of whom were battling ALS. Through their social networks they blasted the ALS Ice Bucket Challenge around the country and even the globe.
Quinn and Frates have joined forces again this year and will launch Ice Bucket Challenge 2015 in August, Wheelock said.
One of the local programs financed by the 2014 Ice Bucket Challenge windfall is the addition to the Northern Ohio Chapter staff of the new position of care-services coordinator for Greater Youngstown. This is the first time there has been a local care coordinator in the region, Wheelock said.
“We have also added an ALS Care Grant Program, which provides grants of up to $500 per quarter for persons living with ALS to reimburse for medically necessary expenses not typically covered by insurance. These programs would not have been possible without the ALS Ice Bucket Challenge,” she said.
At the local level, the Northern Ohio ALS Chapter‘s annual Youngstown Walk to Defeat ALS is set for Aug. 23 at Eastwood Field at the rear of the Eastwood Mall in Niles.
For information about the Youngstown walk, call Nicole Krejci at 216-592-2572.