HUNTINGTON (AP) — Since she was 24, Rachel Torlone has been trying to fight a disease that most people don’t think about until middle-age or later.
Torlone’s grandmother, Erma Reed, was diagnosed with Alzheimer’s in 2004, when Torlone was still a teenager.
Reed died at the age of 82 in 2010.
That’s when Torlone formed Erma’s Angels, a nonprofit dedicated to raising money for Alzheimer’s research.
The group began organizing golf scrambles and biker poker runs, and, over the past four years, has become one of the leading donors to the West Virginia Alzheimer’s Association.
Torlone, now 28, said she and her brother, Jay Swann, started the charity as a way to cope with the loss of their grandmother to such a nightmarish condition.
“Losing everything you know is sad,” she said. “You lose your identity, and there’s no cure. You’re born, you’re an adult and then you’re a child again.”
Torlone said one of the most difficult days she remembers was when her family had to take her car away.
“We watched her slowly forget her name, our names, or she would get us mixed up,” she said. “She could remember things that happened 20 years ago, but couldn’t tell you what she had for lunch.
“When we had to put her in a nursing home, that was the hardest part.”
Torlone became galvanized to spread the word about Alzheimer’s, finding that just talking to people who knew what her family had gone through helped, while raising money helped even more.
In its first year, Erma’s Angels raised $3,200 for the Huntington Walk to End Alzheimer’s. The next, it more than doubled, up to $7,200. It doubled again in 2013, raising $14,400.
“It’s a lot of work,” Torlone said. “If it weren’t for my family and friends, we wouldn’t have the success that we do.
“It’s overwhelming, but I love it.”
In May, Torlone was honored by the West Virginia Chapter of the Alzheimer’s Association as the 2014 Sylvia Watkins Volunteer of the Year. Watkins was a longtime volunteer with the Charleston Walk to End Alzheimer’s.
Torlone received the honor at a reception that also honored U.S. Sen. Jay Rockefeller, D-W.Va., with the chapter’s Legacy Award.
“It was an honor to sit beside Jay Rockefeller,” Torlone said. “It’s a once-in-a-lifetime honor, and it was completely nerve-wracking.
“But it was nice to be acknowledged for what I’ve done.”
Kaarmin Ford, the director of development for the West Virginia chapter, said it’s rare to find the level of dedication to a cause like Alzheimer’s in someone as young as Torlone.
“It’s so important to get younger people involved,” she said. “People in their 20s, 30s, even 40s don’t even think about Alzheimer’s, but if you have a brain, which is everyone, you’re at risk. We need this younger movement.
“Nobody talked about cancer in the 1950s, but now, cancer is not a death sentence because of everything that has been done for research.”
Ford said that Torlone’s passion for the cause is probably her most defining characteristic.
“She won’t take no for an answer from anyone,” Ford said. “And the love with which she does all of this comes from her grandmother. She wants to lift up her grandmother and do it for her.”