January 12, 2004
Suzanne C. Russell
Home News Tribune
In the past year and a half, 31-year-old Ralph Rosa has become weaker, and fatigues more easily.
He works out daily, gets physical therapy, watches his diet and takes his medicine, but nothing helps. He can't get out of bed, go to the bathroom or work out without help.
Rosa has the neurological disease multiple sclerosis. He has difficulty moving his right hand, which he uses to write with, and he's seeing weakness in his left hand. He's fighting to hold onto use of that hand.
"It's frustrating when you do things to better yourself and you don't see anything in return," said Rosa, a former musician. "I have to be helped with everything. That's where the frustration come in. Knowing what I use to do before."
Rosa, founder of the Perth Amboy-based Multiple Sclerosis Research Foundation that raises money for research, sees hope in the bill signed by Gov. James E. McGreevey last week permitting stem-cell research in New Jersey. New Jersey is the second state to allow the research, following California.
"I'm excited McGreevey decided to do this. He help thousands of people," Rosa said. "I'm proud to be part of a state willing to better itself scientifically. "I only have my left hand, but I'm trying. It (the legislation) couldn't come at a better time. I'm very inspired."
Rosa sees stem-cell research as a way to help people with everything from Parkinson's Disease to diabetes and Alzheimer's Disease.
"I'd love for the research to do something positive for all of us," he said.
Stem cells are produced in the first days of pregnancy to help create the human body. Scientists are working to direct stem cells to grow into replacement organs and tissues to treat a wide range of diseases. To harvest stem cells, researchers destroy embryos - a practice condemned by the Roman Catholic Church, abortion opponents and others.
Rosa said stem-cell research is therapeutic cloning, not reproductive cloning of humans or animals - a practice he doesn't support. He said stem-cell research is also not about abortion, a practice he also condones.
"Everything's in a petri dish. It can help so many people. It's easy to criticize when you're OK and you can walk. It's easy to criticize when you don't have the disease. I want to do things myself and I can't because of my MS," Rosa said.
Marie Tasy, New Jersey Right to Life public and legislative affairs director, said the bill signed by McGreevey can let therapeutic cloning lead to reproductive cloning.
"Reproductive cloning is a possibility," she said.
Tasy said she's also concerned the New Jersey law would allow the implantation of cloned human from the embryonic to the newborn stages.
"I don't think too many people in the state would condone what this bill allows," she said.
"The bill Gov. McGreevey signed opens the floodgates to human rights violations and grisly human experiments to the newborn stage," Tasy said.
Tasy said there is adult stem cell research helping people with multiple sclerosis.
She said people like Rosa with multiple sclerosis should look at the evidence which shows adult stems cells are curing people.
"There is no evidence that human embryonic stem cells will cure human beings. It's only been done in animals," she said.
Rosa, however, is hopeful that stem-cell research could result in the duplication of the myelin sheath. With multiple sclerosis, the immune system attacks the myelin sheath that insulates the nerves in the brain and spinal cord. Once destroyed, the myelin sheath regenerates to form a plaque-like scab leaving different points of the nerve exposed and the myelin sheath broken, tattered or destroyed.
"To regrow myelin, that's all I can ask for. That's what I need to get back on track," said Rosa, who would like to be able to walk again. He was confined to his wheelchair in 1999, two years after being diagnosed with the disease.
"It's not an instant cure," said Rosa, who has donated the money from his fund-raisers to Robert Wood Johnson Medical School where Dr. Patrizia Casaccia-Bonnefil, assistant professor has been studying MS since 1994. Rosa was a guest speaker at the school last April.
Casaccia-Bonnefil is cautious about the possible success of stem cell research on Rosa's condition. She said with multiple sclerosis there is an on-going attack on the myelin and if those attacks are not under control any new myelin could be attacked as well.
"You want to give the patients hope but can't expect too much," she said adding that it typically takes 20 years between the time of the discovery of a new medical procedure and clinical trials.
"The process is so slow. It's great to be faster, but you have to be safe," she said.
In addition, Casaccia-Bonnefil said with stem cells it's unclear how they will react once transplanted, and whether they will survive.
"There are still so many questions not answered," she said.
In searching for a cure for multiple sclerosis, Casaccia-Bonnefil is concentrating more on gender specific therapy, a theory shared by researchers in Canada, Austria and England.
"For MS, I'm more hopeful for this type of approach," she said.
Once the stem-cell research is underway and if the initial results look good, Rosa said he might consider participating in clinical trials.
"It's so early but everything's going in the right direction. We didn't have this 10 years ago," he said.
Rosa's Comedy for Cure 4 fund raiser is tentatively scheduled for May
2 in Perth Amboy. His Web site address is www.msrf.org.
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