Head of MS cure project to speak in Ithaca Tuesday

Like getting hit in the face with a bucket of ice water.

That was what it felt like when Patricia Phelps, of Brooktondale, discovered her daughter had Multiple Sclerosis.

And that's why Phelps so desperately wants to see a cure emerge in her lifetime.

“I want my kid to walk and swim at age 57,” said Phelps, whose adult daughter, living and working in Boston, was diagnosed in 2003.

The debilitative illness, better known as MS, affects more than 400,000 Americans and 2 million people worldwide. Its insidious nature lies in its unpredictability, with symptoms varying from person to person, and in each person, from day to day.

But for all its elusive qualities, MS faces a formidable foe — one that won't rest until its presence on earth is nothing but a memory.

It's called the Accelerated Cure Project, and its founder and president, Art Mellor, will be in Ithaca at 7 p.m. Tuesday at the Holiday Inn on Cayuga Street.

Through a support group Phelps started locally for families stricken by MS, Phelps has invited Mellor to Ithaca to talk about his company, the Accelerated Cure Project, whose mission Mellor summarizes in one sentence.

“We are a national non-profit dedicated to curing MS by determining its causes,” said Mellor, who has MS himself.

From a business background, Mellor had helped found three startup companies when he found out he had MS. That was in June 2000.

Frustrated by the lack of research surrounding the causes of MS, Mellor put his entrepreneurial brain to work to start the Accelerated Cure Project in early 2001, then called the Boston Cure Project. Its immediate goal was coordinating research efforts focused on revealing the disease's root causes, and therefore a cure.

At the center of the project's efforts is a repository of blood samples from volunteers who have MS, along with control samples. Wanting to make the samples available to researchers, Mellor's company collected more than 40 over the past year in partnership with two Massachusetts hospitals. Just recently, he signed the first agreement to distribute the samples to researchers in Oklahoma.

“We should be, by the end of the month, shipping out our first samples,” Mellor said.

In the meanwhile, a larger version of the pilot sample bank has been launched by Mellor and his six-person staff, with the goal of 1,000 subjects at 10 sites around the country.

At Phelps's request, Mellor will be introducing Ithaca and, hopefully, Central New York to the Accelerated Cure Project on Tuesday.

“I'm gonna talk about our approach, and why we feel it's the surest way to make progress in MS,” Mellor said.

Phelps, who found out about the Accelerated Cure Project through her daughter, has launched her own letter-writing and fund-raising campaign for the project she now believes in so strongly.

But in the meantime, she's also founded a support group that's helped ease the interim, by meeting with people who know what she's going through.

Almost exactly a year ago, Phelps started an online message group and a monthly meeting at the Holiday Inn for any parents or caregivers who have children with MS. The focus was for the family members who don't have MS themselves, but face a different kind of anxiety as caregivers.

Since then, 14 families have joined the online group, and between five and seven attend the monthly meetings. With no real structure or agenda, Phelps said they simply meet and talk. More importantly, they connect with each other.

Two women whose husbands both have MS met through the group, and now talk regularly, Phelps said. A 70-year-old woman whose son has MS also attends.

“I thought it would've grown to be a few more, but I'm happy with where it's at,” Phelps said. “I think it's quality rather than quantity.”