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FARAFARA Cure FA

Community Champions: EDSers Help Young People Afflicted with Neuromuscular Disease

Every day is a challenge for Margaret Ferrarone's daughters, Sara and Laura. Both girls are wheelchair-bound. For them, even the simplest daily activities — getting out of bed, cutting their own food, positioning toothpaste on a brush — pose a challenge.

Sara, 20, and Laura, 17, suffer from Friedreich's Ataxia (FA), a rare genetic disease that causes progressive damage to the nervous system and muscles. Symptoms, which generally appear between the ages of five and 15, can include muscle weakness and loss of coordination, vision impairment, slurred speech and heart disease. Within eight to 10 years of its onset, FA usually results in an inability to walk. There is currently no treatment or cure.

 

Margaret Ferrarone, an EDS Applications Human Resources business partner in Rochester, N.Y., is hopeful that research will slow the disease's progression and ultimately, find a cure. She and other EDSers have rallied behind the efforts of the Friedreich's Ataxia Research Association (FARA). Founded in 1998, FARA is an all-volunteer organization that supports education and research into treatment and a cure for this relentless and devastating disease.

People are the fabric of EDS, and volunteer efforts like those on behalf of FA point to the high standards of EDS' 2007 goals.

On May 19, EDSers will take part in the eighth annual Walk to Seek a Miracle at Nazareth College in Rochester. Organizers hope to raise $75,000. Ferrarone, who has managed the Rochester walk for five years, has high praise for her colleagues' efforts.

"They're always there," she said. "The only thing I could ever express is the gratitude of my family because they [EDSers] are giving so much of themselves personally."

The Help of Many

Over the years, EDS' FA volunteer group has expanded beyond Rochester, across many U.S. organizations. Most employees have never met, but have a common goal - finding a cure for FA. They volunteer in numerous ways. For example, a shoe shine event at EDS locations in Rochester and at the Xerox account yielded $1,042, and a barbecue and jeans day in Amherst, N.Y., netted $250.

"I talked to one of the key FA researchers. The researcher said what EDS has done has pushed research into the disease forward by two or three years. That made me cry. Co-workers say they do this because it feels good to help. That's the kind of people we have at EDS."
— Margaret Ferrarone, EDS Applications Human Resources business partner

"EDS volunteers are providing FARA with its IT [information technology] strategy, IT priorities and technical solutions," said Marianne Wilcox, FARA's chief information officer. "This is enabling FARA, the FA scientific community, patients and families access to critical information that is aiding in the fight to find a cure."

Renee Bailey, an EDS program manager in Henrietta, N.Y., and Team EDS Walk chairperson, said it's exciting to see the interest and enthusiasm for FARA grow.

"People from EDS are great about helping one of their own," she said. Mary Beth Kosmicki, an EDSer in Rochester, assists with the FARA Web site and newsletters, and works with the media to publicize fundraisers. She also served on the Walk to Seek a Miracle Committee and now assists with the Foundation for a Miracle, an organization that helps FA families in the Rochester area.

"When I see the challenges that the Ferrarone girls fight every day and the positive attitude they maintain to break down those barriers, not only does it give me perspective on what's important, but it's really the primary reason I stay involved," said Kosmicki, a lead with EDS General Motors Global Manufacturing & Quality Communications. "We're close to identifying ways to slow down the progression of the disease and we can't stop fighting until the researchers find a cure."

Bill Hartnett, a 25-year EDS veteran, has been the inspirational leader and key driver behind the FA effort, managing fundraisers and serving on the FARA board. A survivor of a serious bus accident eight years ago himself, Hartnett sits on the FARA board, served as project manager for the Ataxia Scales IT project and stays involved in ongoing projects.

John Cubbin, EDS vice president for the manufacturing business on the GM account, has served on FARA's board of directors since 2005, providing direction and leadership.

"All three of these women are a great inspiration," Cubbin said of Ferrarone and her daughters. Some 60 EDS volunteers have contributed to IT solutions on behalf of FARA. They have devised a Web site that is a primary means of communication between FARA and key audiences. And, via a partnership between EDS and the Rochester Institute of Technology, software engineering students have developed solutions with oversight by EDSers. So far, they have assisted with a Patient Registry and Clinical Trials Network systems.

The Patient Registry allows patients from around the world to submit requests for consideration for upcoming clinical trials. There are 550 patients worldwide on the system, and the goal is to register 2,000 by year-end. The Clinical Trials Network Tool is a solution that allows a dozen FARA Global Research Centers to communicate and share clinical trial information with each other.

In the first application delivered by EDS volunteers, the team used manually-intensive computations and analysis from researchers with eight research centers and developed an IT solution. Called Ataxia Scales, the system was developed using Microsoft's .NET and automated standardized clinical measures.

"When I see the challenges that the Ferrarone girls fight every day and the positive attitude they maintain to break down those barriers, not only does it give me perspective on what's important, but it's really the primary reason I stay involved."
— Mary Beth Kosmicki, a lead with EDS General Motors Global Manufacturing & Quality Communications

Ataxia Scales provides researchers across the United States with a secure, consolidated means to collect, analyze and share findings about the disease's progression. The project received the Buffalo / Niagara Emerging Technology award in 2005 and was a finalist in the World Information Technology and Services Alliance award in 2004.

Most recently, the EDS Foundation, which provides funding to community organizations, awarded a $40,000 grant to FARA.

A Mother's Pride

Ferrarone is proud of her daughters. Sara is a humanities major at Roberts Wesleyan College in Rochester and wants to be a writer. She lives on campus, where aides help her with ordinary tasks such as getting out of bed and dressed for school. Her weekly schedule includes two full days of classes and three one-class days.

"Sara is reliant on other people all day," said Ferrarone, whose son, John, 22, does not have the disease. "It's hard as a mom to let her go. However, we hired really good help. There are so many worries I have, but I have to have faith."

Ferrarone's younger sister, Laura, is a junior at Southerland High School in Pittsford, where the family lives. An avid football fan, she roots for the New York Giants, and recently attended her junior prom.

"Their days are hard," Ferrarone said. "It's a struggle. Every little task is difficult because of the implications of a nerve condition like this. They suffer pain. They have to get up earlier. There's a huge fatigue issue with this disease, so getting through a day is hard."

"But as far as their demeanor, you see the smiles on their faces and they're happy people. They want a cure," she continued. "We've always been very hopeful, but also very practical. They're realistic about the disease, but encouraged by what they hear as far as research. As my husband, Bob, said from the beginning, we have to take this one day at a time."

Ferrarone said it's hard for her daughters to verbalize things. "This condition is emotional. They are reliant on others. Laura, in particular, is independent. She wants to work and be treated no differently. The reality is difficult for her," she said. "But they are so blown away by what people do for them. EDS to them is one of the best things there is."

Ferrarone believes that promising treatments for FA are on the horizon, hopefully within the next five years. "Will they ever walk again? That's unlikely," she said of her daughters. "But will the disease be slowed or stopped so they can live a fuller life? That's the hope we cling to."

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