Local MS sufferers take action

Back in New York City, where she lived at the time, on a Monday, she went to an eye specialist who had her see a neurologist. She had multiple sclerosis.

“I was diagnosed within 48 hours,” she said.

She said her children, who were born after her diagnosis, have only seen her with the disease.

“I try not to make MS a family event,” Bonacci said. “It's one aspect of my life, but they're sensitive to the issue that mom walks funny, or I can't go skiing with them or sailing.”

She realizes there's skiing for people with disabilities, and she was a good skier before, but she's not sure about going now. While the family took a big charter boat vacation, she can't navigate a small sailboat with her son.

So Bonacci and others with multiple sclerosis would like a cure.

A benefit event for Accelerated Cure Project for Multiple Sclerosis, which is creating an extensive database for researchers, is set for 2-5 p.m. Sunday, Sept. 23 at the Ithaca College Square in Phillips Hall, the student union. There will be live music, a silent auction, 50-50 raffle, a single item raffle and door prizes.

The benefit, including music by Ithacacappela, Premium Blend (a female a cappella group), I.C. Voice Stream (a coed a cappella group), the faculty and staff chorus, VoICes and Ithaca resident Josh Oxford's band, OXtet, is organized by a committee of Tompkins County residents facing multiple sclerosis personally or in their families. An Ithaca College group called Do Anything Nice also is sponsoring.

Accelerated Cure was the brainstorm of Art Mellor, who created the organization aimed at creating extensive databases for multiple sclerosis research after he was diagnosed with the disease.

“I have an engineering background,” Mellor said. “In my world when there's a problem, you develop a plan.”

He started by meeting with his neurologist to learn more about multiple sclerosis, which is likely to be hereditary. Bonacci said multiple sclerosis is an autoimmune disease, something that runs in her family. Although her mother manages it as well as can be expected, she has lupus, and Bonacci's brother has Crohn's disease.

Mellor said, “We concluded the missing piece of MS was finding what causes it.”

This year, his new company created a repository to hold extensive, although non-identifying data, with blood samples and thorough patient histories, about 600 so far, he said. The plan is to collect many thousands of samples and histories, he said.

If researchers can use this data, possibly collaborating, a cure could come faster, he said.

Most studies of multiple sclerosis look at about 30 cases, he said, and it's hard collecting data and writing grants for researchers who are also often professors and practicing physicians. He hopes that giving multiple sclerosis researchers, who might work in collaboration, more data to study, that a cure can be found sooner.

Bonacci, who trained and worked as an engineer and manager at IBM before moving to Ithaca 10 years ago, found the Accelerated Cure approach made sense.

“I appreciate his approach,” Bonacci said.

Bonacci said she's doing pretty well and has felt better on a non-dairy, non-gluten diet this year. She loves to make Italian and Mediterranean fare and has found she can work with the dietary changes. It's harder working in the kitchen, having lost feeling in her hands because of the disease.

Mellor has had multiple sclerosis for seven years and said he's doing better than many people who've had it that long. Like Bonacci, who has an early morning routine at City Health Club, he works out at a gym, and he has found he's stronger than ever but has less endurance. Also like Bonacci, he has lost some sense of feeling in his hands.

Every case of multiple sclerosis looks a little different, said Patricia Phelps, one of the organizers of the benefit, who works in the Ithaca College School of Music.

She said most of the local committee members have personal or family experiences with multiple sclerosis. Among the committee members are Bonacci, Ed and Sue Hooks, Patricia Phelps, Kim Sanderson, Deirdre Yavorsky (former Commons business owner with multiple sclerosis). Ryan Salisbury, president of the Ithaca College Do Anything Nice, is also on the committee.

Creating the Accelerated Cure Project for multiple sclerosis has been hard, Mellor said.

“It's the fourth company I'd co-founded. It's like climbing a mountain. Once you get to the top you say that's fun, but you don't enjoy the struggle up there,” he said.

Although somebody else might find a cure for multiple sclerosis, it was scarier not doing anything, he said.