Meet Legacy Society Members Don and Mary Lois Long
A parent’s love for their child is the greatest of human emotions, and it forms one of the strongest bonds imaginable. The love Don and Mary Lois Long had for their son, Jeff, gave them the strength to cope and persevere with any obstacle that life threw at them -- including ALS.
In 1985, Don and Mary Lois were in their late 60s and ready for retirement when they received the devastating news that Jeff had been diagnosed with ALS at the age of 36. Like many people with Lou Gehrig’s disease, Jeff was an athletic person who was an accomplished gymnast in college, specializing in the parallel bars. After he graduated, Jeff started a successful retail shoe business, got married, and had three children. Jeff’s wife was a nurse who knew exactly what ALS did to patients and families. She decided it would be too much for her to handle, and she subsequently filed for a divorce.
According to Don, Jeff handled this heartbreaking turn of events the best he could. “Jeff was an unusual young man in that he was even-tempered. He accepted his fate and did the best he could to get the most out of life.” To be close to his kids, Jeff bought a house for his ex-wife and their children a few miles away, but now he had to face this unforgiving disease alone. Putting their retirement plans on hiatus, Don and Mary Lois moved to Kansas City from Columbia, Missouri, to be with their son and assist in his care, as well as provide emotional support for their young grandchildren.
This was the beginning of the Long family’s fight against ALS. During the years they cared for Jeff, Don and Mary Lois became heavily involved with the Keith Worthington Chapter of The ALS Association. They made donations, helped with newsletters, mailings, events and even visited other ALS patients. Eventually Don was elected to the chapter’s Board of Directors and he brought a sense of realism to other members of the Board because of his first-hand experiences with the disease.
circa 1981. From left to right: Don Long,
Don's father Clarence, Don's grandson Ben,
and Don's son Jeff, who died of ALS in 1990.
In the winter of 1990, Jeff lost his battle with ALS. “That morning he wanted to tell me something, but he just couldn’t do it. He laid back and peacefully passed away,” recalls Don of his son’s final moments. After five years of caring for their son and grandchildren, Don and Mary Lois continued their son’s legacy in Arizona by founding The ALS Association’s successful Valley of the Sun Chapter, now known as the Arizona Chapter.
Mary Lois has since passed away and, although Don is no longer active with the chapter, he still continues his family’s legacy by contributing to The ALS Association through a charitable gift annuity. With this financial arrangement, Don transferred some assets to The ALS Association, which the Association reinvested. In return, Don receives fixed income payments from The ALS Association for his entire life, after which the funds are available for use in the fight against ALS. In addition, Don received an income tax charitable deduction the year he established his gift annuity.
“I know the money given to The ALS Association will be used for the betterment of ALS patients,” explained Don on why making gifts to the Association is so important for those living with this disease. His impact on the ALS community has been immeasurable, but the greatest gift Don ever gave was being there when his son needed him most.
Payments made under a charitable gift annuity are backed solely by the full faith and credit of the issuing organization, are not insured or guaranteed by an insurance company, are not protected by any insurance guaranty association, and are not backed in any way by the states.
