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In quest for a cure, an $80,000 assist

An Australian genetic researcher received a check Wednesday from a local foundation and the boy for whom it's named.

Dr. Stephen Wilton was presented $80,000 by Suneel's Light Foundation, established several years ago in honor of Suneel Ram, a fifth-grader at Heim Middle School in Amherst, to raise funds for research leading to a cure for Duchenne muscular dystrophy, a lethal childhood disease.

"Suneel is a very courageous young man, who is an inspiration to so many of us here in the local community," said Mayor Byron W. Brown, who presented the check in the law offices of Phillips Lytle with Neera Manning, who started the foundation on behalf of her son, and Jennifer Haggerty, director of research for Suneel's Light.

"Your work gives Suneel hope and gives other young people hope that advances will be made to find a cure and to help people who have this disease," the mayor said.

"This sort of money means far more to me than the funds for the major associations," Wilton said. "I guarantee we're going to work very hard."

The debilitating neuromuscular disorder is characterized by a progressive weakening of the muscles. It mainly afflicts boys, usually leading to death from respiratory or heart failure by the early 20s.

Earlier, Wilton discussed his research into a therapeutic approach to Duchenne dystrophy with Buffalo-area medical professionals, including researchers from the University at Buffalo and the Buffalo Niagara Medical Campus, as well as attorneys who specialize in medical issues.

Manning, an Amherst family practitioner, said afterward that she was encouraged and thought that important progress has been made toward treating the disease. She called Wilton's work "really pivotal."

"We're moving, but in stops and starts," Manning said. "I think the next two years will be very important to tell us what is going to happen, especially for Suneel."

That has taken on added importance because Suneel -- who has a particularly aggressive type of Duchenne dystrophy -- is getting worse.

"The disease is really progressing," Manning said. "Suneel's working very hard in school, but he's losing more ground, and I think it's been very hard for him.

"He's having more trouble walking. His hands have become more contracted. He's getting weaker. We're just trying to move along as best we can."

Suneel, 11, has felt the sting of social isolation because of his condition, but he's usually upbeat, Manning said.

"He has a zest for life, and play dates and friends are his whole world -- it's what he lives for," she said. "He asks me, 'Momma, do we have play dates for the weekend?' "

Manning is hopeful that Suneel will take part in a clinical trial in the not-too-distant future that will lead to an effective therapy for him and other children with the disease.


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