Sylvia D'Aprile and Karen Waldron with Jason Schewe, general manager of Delmonicos, at past MS fundraising event. (Submitted photo)
COLONIE— A mother-daughter team raised more than $200,000 in their fight to do everything they can to defeat Multiple sclerosis, a disease that causes nerve damage which disrupts brain to body communication. Their next fundraiser is Sunday, Dec. 4, at the Century House in Latham.
Karen Waldron, 45, was diagnosed with MS in 1997 on Valentine’s Day. But Waldron’s road to a diagnosis was not a short one. The December before her diagnosis, Waldron explained that her body had gone numb from head to toe. Eventually, the numbness worked its way out of her body, but remained in her hands, and still remains in her hands today. As a result, Waldron, who was working as a bank teller, was forced to take time off work because she couldn’t use her hands. The cause of MS is currently unknown.
“I couldn’t write, I couldn’t cut my meat,” Waldron said.
The full body numbness was not the first sign. In April of 1996, prior to her diagnosis, doctors told Waldron that she had Optic neuritis, an inflammation of the optic nerve that is frequently associated with MS. A neurologist also told Waldron that her issues were the result of stress, and that she could go back to work. Another doctor told Waldron that she had Fibromyalgia, gave her medication, and repeated the sentiment that she could go back to work.
Eventually, after months of bouncing around from doctor to doctor, from diagnosis to diagnosis, Waldron’s general practitioner took her out of work, and Waldron got a second opinion. She returned to her neurologist, went through an MRI, and was finally, officially diagnosed with MS, something that Waldron said she could have told the doctors months before. Waldron was given medication for relapsing-remitting MS, and went back to work in the summer, but her hands are still affected 25 years later.
Twenty years ago, Waldron said, MS was difficult to diagnose and treat due to lack of technology and medicine that could halt the disease. Waldron also pointed out that many people go through long lengths of time before they’ve diagnosed.
“There’s quite a few people out there that have MS who weren’t diagnosed for quite awhile,” Waldron said. She said it’s easier to diagnose MS now because doctors are more aware of what’s going on with the disease, and technology, specifically MRIs, have advanced to the point where they can more quickly diagnose people. There are also many more therapy options now.
“I was fine,” Waldron said about finally being diagnosed. “It was just a matter of being diagnosed and getting the treatment. Being diagnosed, it didn’t bother me, really.” She had been doing research into the disease prior to her diagnosis, she said, and mentioned that her family was more surprised with the diagnosis than she ever was.
Stephanie Kunes,who is the president of the upstate chapter for National Multiple Sclerosis Society, said that Waldron and her mother, Sylvia D’Aprile, do 99 percent of the fundraising and event organization themselves, and the chapter is only there to give them any support the need. Kunes has been with NMSS for 35 years, and when she started she said there was no treatment for MS. She said working with the Waldron and D’Aprile who, according to her, has an impressive ability to bring people together, is all part of the larger effort to halt the progression of the disease.
Kunes said that being able to work with both Waldron and D’Aprile has been an illuminating experience. She pointed out that Waldron, as someone who is living with MS, is by no means taking her life sitting down.
“It’s wonderful working with both of them,” Kunes said. “It’s an amazing family that really put their heart and soul into raising money for MS.”
Right now, Waldron suffers from some cognitive issues, and extreme fatigue, but D’Aprile said that MS is not something that others can see from the outside.
“Up until three years ago, you wouldn’t know that she had MS. Nobody on the outside would knows she had MS,” D’Aprile, 67, said. She explained that, upon Waldron’s diagnosis, the family came into contact with others affected by MS, and they began their fundraising efforts.
Waldron’s first foray into raising awareness for MS came very soon after she was diagnosed. That April, she participated in Walk MS, a fundraising event held around the country to raise awareness and treatment and research money for the disease. After that, she became involved with the upstate chapter of the NMSS. Waldron was the upstate chapter chair for the past three years, and her chair duties recently last October. Waldron also began to do fundraising at work, selling small stuffed animals with MS tags on them to raise awareness.
Since then, Waldron has created her own Walk MS team called Waldron’s Walkers with the goal of raising more money each year to help fight the disease. About 11 years ago, D’Aprile attended her first Woman Against MS luncheon, and it was after attending the event she decided she wanted to do more to raise even more money to fight the disease. As a result, Waldron and D’Aprile created an annual fundraiser that is held at Delmonico’s Steak House in Colonie, in which 100 percent of the proceeds are donated to Waldron’s Walk MS team. After initially struggling to build attendance, the Delmonico’s fundraiser now hosts 300 people each year. They have participate in an MS 5k, called the Monster Scramble.
Since 2000, Waldron’s Walkers has raised $274,000. D’Aprile’s goal was to raise $300,000 by 2020, but said now that they will go over that mark next year due to their fundraising events. This year will be the third year that D’Aprile hosts the NMSS Upstate Chapter Holiday Gala, which will be held on Sunday, Dec. 4 at the Century House in Latham. Tickets to the gala cost $50.
For now, D’Aprile strives to reach the next step in her fundraising efforts, mentioning she functions on a motivation to totally end the disease. But for now, the large team involved with Waldron’s Walkers will keep the team at the forefront of the local MS fundraising efforts.
“It’s good to look on the positive end of something, not the negative end of something,” she said. “I’m all about fundraising and spreading awareness and going forward.”