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The ALS Association’s Upstate New York Chapter Honors Local Family
for Their Advocacy Efforts in Fighting Lou Gehrig’s Disease
By Stephanie Dufner Although he has battled the progressive neurodegenerative muscular disease ALS, amyotrophic lateral sclerosis, commonly referred to as Lou Gehrig’s Disease, for the past three years, Liverpool denizen Mark Airel, 43, remains active. One way he maintains a busy lifestyle is through working closely with The ALS Association’s Upstate New York Chapter in raising awareness and funds to support patient services and research to find the causes and a cure for people living with this disease.
The chapter has proclaimed Airel and his wife and primary caregiver Patti the family that best exemplifies the spirit of “ALS Across America” during ALS Awareness Month in May. The “ALS Across America” national campaign recognizes courageous individuals with ALS and their caregivers who are role models to people with Lou Gehrig’s Disease. These special individuals reflect the spirit of the organization as they make a positive difference in their community by expanding awareness of ALS and embodying the spirit of living life to the fullest.
“Mark is dedicated to raising awareness of ALS,” said Katharine Loomis, the chapter’s executive director. “He is also an individual that supports the chapter in any way he can.”
Although the disease has limited his upper body movements, and he relies on a motorized wheelchair for mobility, Airel continues to work at CNA Insurance in Liverpool as a workers compensation litigation specialist. The company has supported Airel’s activities in waging war against Lou Gehrig’s Disease as it has matched funds for donations given to the chapter’s annual Walk to Defeat ALSTM in Liverpool since 2006. At last year’s Walk event in September, Airel’s walk team, Walking on Air, which consisted of 23 people, raised nearly $17,000 to go toward local patient services programs and research.
Last year, Airel served as honorary chair for the Syracuse Walk to Defeat ALS. He spoke to the event’s participants about the importance of raising awareness and monies to fight Lou Gehrig’s Disease. Airel’s brother, Bryan, also frequently works with his sibling and the chapter’s employees in their advocacy efforts.
“Mark is always willing to talk to other patients, their families, and the media about his battle with ALS,” Loomis said.
Throughout May, The Association and its nationwide network of 42 chapters will reach out to communities across the country to educate the public about Lou Gehrig’s Disease and urge people to join The Association in the fight to make ALS a disease of the past. ALS usually has a survival rate of two to five years from the time of diagnosis.
The Association’s National ALS Advocacy Day and Public Policy Conference, which has grown to be the single largest gathering of the ALS community, and is part of ALS Awareness Month, will be held this year on May 10-12 in Washington, D.C. Airel and his family plan to continue to raise awareness about Lou Gehrig’s Disease on a local level throughout May by speaking with media outlets.
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