(This is the first article in a five-part series highlighting the 2018 recipients of The ALS Association Heroes of Hope Awards.)

Mike Maloney is one of the reasons we provide care services to people living with ALS, advocate for legislation that greatly impacts the quality of life of those living with the disease, and fund research toward treatments and a cure for ALS.

At the 2018 Leadership Conference for The ALS Association last month, he was posthumously honored with a Heroes of Hope Award. His wife, Ellyn Maloney, accepted the award in his memory.

The ALS Association Upstate New York Chapter first came to know Mike in May 2013. He had been living with his ALS diagnosis for about a year and just shared the news with his closest friends.

Their immediate reaction was to form a Walk to Defeat ALS team in his honor. In just nine weeks, the team became a dominant force in the 2013 Buffalo Walk to Defeat ALS, raising almost $40,000 and amassing a team of more than 100 walkers.

“Over the next year, we grew to know Mike and his family and support system,” says Liz Krisanda, executive director for the Upstate New York Chapter. “Mike stepped up as the co-chair of his local Walk and enlisted the help of many of his friends to fill gaps on the committee and improve fundraising, event experience, and community awareness and visibility.”

Under Mike’s direction, the Walk saw a 38 percent growth in participants and a 37 percent growth in fundraising in just one year. But, his job was not done.

Mike became a voice for the ALS community on a local level, using his contacts to get coverage and special programming on local news stations and newspapers. He took his efforts to the national level, becoming an ALS Advocate with The ALS Association Advocacy program in Washington, D.C.

True love and professional life

Mike met his wife Ellyn met on a blind date in 1970. He was 18. She was 17. Mike proposed with his grandma’s ring at Niagara Falls.

They married in 1975 and, during their 41 years of marriage, welcomed three daughters, three sons-in-law, and nine grandchildren. Their family and what they did together revolved around their children and grandchildren.

“We did simple things together but were always together,” says Ellyn. “We went on picnics and to the beach, enjoyed frequent family dinners, did a lot of ‘work stuff,’ and took a lot of trips to our favorite spot, Niagara Falls.”

Mike getting diagnosed with ALS took his and Ellyn’s relationship to a different level. “Our faith, sense of humor, and deep love for each other gave us the strength to keep living, even while Mike was slowly dying,” explains Ellyn. “Really, it was his attitude that made life with ALS and my job as caregiver much easier.”

In addition to a wonderful, close-knit family, Mike was blessed with a career he truly loved. It began at Bristol Homes in 1974 and, at the time of his retirement in 2012, he was executive director for Fox Run at Orchard Park retirement community in Orchard Park, N.Y.

Mike devoted his life to eldercare advocacy, even before it was popular. As director of many assisted living facilities, he sought to improve the status of New York’s "assisted living" entities. He energetically met the challenges facing nonprofit homes, working through associations and political organizations.

He attended advocacy conferences for the aging in Washington, D.C., and Albany, N.Y., and was president of the Network in Aging. He also worked with the Department of Health and others to set up the program and policies in compliance with all regulations, while creating beautiful, warm environments for those entrusted to his care.

“When our family was young, we would spend Christmas Eve with the residents,” says Ellyn. “Mike [would dress as] Santa Claus and [give] the residents their presents.”

A legacy of home care

As Mike wrote in 2014, he wanted "to make some difference for the next guy who hears, 'You have ALS.’ So, I embraced awareness and advocacy."

He and his family attended the National ALS Advocacy Conference in Washington, D.C., three times, bringing Mike’s unique perspective to the experience. At the third conference, he obtained special access to the White House for a select group of The ALS Association staff and patient and family advocates, in hopes of advocating for quality of life initiatives.

Most people living with ALS want to remain in their homes for as long as possible but struggle to obtain appropriate home care. Many insurance policies don’t offer enough coverage and many home care agencies lack both the training and staffing bandwidth required to care for people with ALS, especially on a long-term basis. At the same time, family caregivers are often overwhelmed by the increasing complexity of the required medical care.

Mike wanted to ease some burdens for the next people diagnosed with ALS and saw a great need to augment caregiver support to allow people with ALS to have their needs met in their home. He wanted home care to be his legacy.

Just hours before his passing on February 3, 2017, Mike was on the phone with members of Congress in Washington, D.C., and The ALS Association national office, pushing his platform.

“It’s so inspiring that he used what remained of his voice to address ALS and home care,” says Krisanda. “Mike was a true advocate. And, although he didn’t have the opportunity to see The ALS Association launch the ALS Home Health Initiative or the Pete Frates Home Health Initiative pilot program in Massachusetts, knowing his efforts elicited progress would have put a smile on his face.”

Ellyn says, “Because of Mike’s grace and dignity in dealing with ALS, I have so many happy memories – many of them made after the diagnosis. He and I were soulmates, and even though he’s no longer physically present, he’s with me every minute. His spirit and soul walk beside me. I hear Mike’s laugh, see his smile, and hear his voice in everything I do.”

Mike is why we fight for treatments and a cure for ALS. #whywednesday