Chester Township Scientist Battles Autism

BY PHIL GARBER, Managing Editor
Recorder Newspapers, May 25, 2006

It was Christmas morning 2005 when Richard Wagner and his wife went downstairs in their Westchester County, N.Y., home to find tiny pieces had been torn from the corners of the wrapping paper of gifts under the Christmas tree.

For Richard and Judy Wagner, it was a “Christmas miracle” because they realized the paper had been torn by their excited 8-year-old-son son, James, who wanted to peak at his gifts.

Just a few months earlier, James didn't have the slightest interest or awareness of Christmas.

He could barely respond to his surroundings as he had been in the throes of a childhood onset of autism.

Wagner said his son's life was virtually saved through an innovative program led by Dr. Philip DeFina, a neurosurgeon who lives in Chester Township.

The treatment for autism, coma patients and others suffering from altered states such as Alzheimer's disease and dementia is being refined by DeFina and others involved with a new foundation, known as the International Brain Research Foundation (IBRF).

DeFina formed the non-profit organization in April 2005 and it is seeking funding to continue its work.

The foundation will host its first benefit from 4 to 8 p.m., Saturday, June 24, at the Desiderio Tranquility Farm, 300 Old Chester Road. Tickets are $200.

The event will include hors d’oeuvres, music and a silent auction. For tickets, call the IBRF at (212) 505-3400.

The event also will honor Dr. Peter Carmel, chairman of the department of neurological surgery at the University of Medicine and Dentistry of N.J. and Dr. Joseph Valenzano, publisher of “Exceptional Parent” magazine.

The chair of the benefit is former state Sen. Leanna Brown.

Extensive Background

DeFina, 49, is the chief executive officer and chief scientific officer of the IBRF.

He is a faculty member, chief neuropsychologist, and director of neurotherapies at the New York University School of Medicine’s Brain Research Laboratories.

DeFina also works with children with severe emotional disorders as the neuropsychologist with the Lord Stirling School in Basking Ridge.

He was a guest researcher at the National Institutes of Health and was a member of the international neuroscience subcommittee of The World Health Organization.

While a member of the World Health Organization, he traveled to Eastern Europe and Russia to study the effects of the 1986 accident at the Chernobyl nuclear power plant on children.

He and his associates have more recently consulted with doctors treating the one survivor of the West Virginia coal mining accident that killed 12 miners.

DeFina and associates also consulted with Israeli physicians treating former Prime Minister Ariel Sharon after a stroke this year left the Israeli leader incapacitated.

“I set a goal that by the time I turned 50 I would dedicate myself to facilitating really cutting edge research,” DeFina said in an interview on Thursday, May 18, at his Furnace Road home.

He said he was a graduate student at New York University in the 1970s when scientists were studying the causes of comas by installing deep brain stimulators in comatose cats.

“The question was what chemistry occurs to keep people in vegetative states,” he said.

The research led to development of a theory that neurotransmitters in the brain go into a self-defense mode to preserve the brain stem and basically “go to sleep” in people who are in a coma.

Closing down the transmitters blocks the brain from transmitting various chemicals, including endorphins.

“We don't know why this happens but we think it is because the brain is trying to maintain life,” said DeFina.

The key was to reactivate the chemicals in the brain. Researchers injected comatose cats with a chemical called Narcan.

The drug is commonly used to block heroin metabolism in addicts. Heroin is similar in chemical structure to endorphins.

The Narcan in cats awoke them for six to eight hours when they would fall back into a coma.

“A combination of further drugs along with deep brain stimulators kept the cats conscious,” DeFina said.

DeFina brought the research on the cats into the human realm and has found significant success.

The foundation's first patient was a 65-year-old man who had slipped into a coma after heart bypass surgery. DeFina said the man was examined by many experts who had a grim prognosis.

“The consensus was that in his condition there was no likelihood of recovery and no treatment,” said DeFina.

The man was among the 50,000 to 75,000 people who become comatose each year in the U.S. and for whom there is “virtually no treatment.”

DeFin's team began treatment that included the use of Narcan and electronic, deep brain stimulation.

“As we pumped the Narcan in, his eyes opened and he started looking around,” said DeFina.

Though the patient was in a dazed state, brain sensors showed patterns of normal brain activity were returning.

In succeeding months and continuing treatment with various kinds of medication, the patient's condition improved to the point where he was able to communicate and speak, said DeFina.

“This was the first time this approach was used clinically,” said DeFina.

Seven months ago, DeFina and others involved with the IBRF reported their success at a meeting of the International Neurosurgeons Foundation for the European Union in Istanbul.

“We got a standing ovation,” said DeFina.

DeFina returned last week from a series of meetings in Germany, Macedonia, Austria and Hungary, where he spoke about the IBRF and its findings and received an equally impressive reception.

The patient was a highly successful Realtor and his wife owned a major travel agency. In gratitude, the couple donated $2 million to the IBRF and the funds have been used in early treatment and research.

“Much larger funding has to be made available to set up multiple centers to address chemical imbalances in altered states of consciousness,” DeFina said.

Autistic Children

The IBRF has worked so far with two other children, both diagnosed with autism.

DeFina said the same essential techniques used to treat the comatose man were used for the autistic children.

Special imaging equipment measured the electro-chemical activities in the brain so the researchers could attempt to bring back a balance.

One of the children was James Wagner. His father said the boy had previously been bright and healthy with numerous friends and interests and no apparent problems.

“He was a spectacularly great kid,” said Mr. Wagner, who is the founder and owner of Intelligent Search Technology, Ltd, a computer software company.

But in the summer of 2003, when the boy was 6, he became ill and his condition mysteriously began to worsen to the point where he became completely mute and apparently unaware of his surroundings, his father said.

Painful Event

“There is nothing more painful than seeing very aspect of a child's personality leave his body,” said Mr. Wagner.

“The doctors said there was no hope for James. We were not prepared to give up.”

Eventually, the Wagners learned of DeFina and his work with autistic people.

DeFina was called in and observed the child last November and found him with many of the most severe symptoms of autism including flapping, toe walking, mumbling and rapid eye movements.

DeFina said the boy had apparently suffered a partial complex seizure.

He was further evaluated at the New York University Brain Research Lab where it was determined that his brain was intact although regions of the brain could not communicate with each other.

He was given a regimen of anti-seizure drugs and other treatments and the boy quickly began to improve.

By Christmas, he could draw pictures and communicate with family, DeFina said.

“Between the time we started his protocol and now, his overall level of consciousness is the difference between night and day,” said Mr. Wagner.

“I have no doubt that one day, James will achieve his potential and participate in society and be able to have a family.”

Another person who will be closely following the work of DeFina and the IBRF is Lorie Furth of Mine Hill Township. Her son, Nick, 8, attends the Celebrate the Children school in Stanhope, a school that specializes in teaching autistic children.

Nick also was on the cover of Time magazine for its May 10 story on autism.

Furth said her son was diagnosed with autism, attention deficit hyperactivity disorder (ADHD) and pervasive personality disorder.

“It's like my son has a hundred radio stations bouncing around in his head,” Furth said.

She said her son has come a long way in the year he's been at the school. He was formerly very violent to himself and others but that has subsided.

“He's not physically violent now,” she said.

“I'm not afraid to turn my back on him anymore.”

Modifications Effective

She said the behavior modification techniques used at the school are helping and that she would be reluctant to get involved in new therapies.

“Right now, we're all headed on the right path,” Furth said. “I do prefer the older, tested ways and methods. He's where he needs to be. He's feeling wonderful about himself.”

DeFina said the IBRF is working to create a new paradigm on treating people with autism and other altered states of consciousness.

He said the technologies and modalities being developed will help identify the many subtle variations of such conditions.

He said there are at least six different subtypes of autism, ranging from the more milder, Asperger syndrome to the more severe manifestations.

“Now, when people look at autism, they see the entire syndrome,” DeFina said. “But it's like cancer. You wouldn't treat colon cancer with the same agents to treat lymphoma.”

But as with all other kinds of research, the success of the IBRF is connected to funding. DeFina said the 12 to 15 scientists with the foundation all work voluntarily but that the research is very time-consuming and the required, sophisticated scanning devices are very expensive.

“We have an international group of the best minds in the world,” he said. “Now we need the funds.”

It would be much easier to attract funding for the IBRF if its activities had been published in major peer review publications such as the Journal of the American Medical Association or the British-based Lancet.

Lacking Statistics

But DeFina said the foundation is too new and hasn't developed enough statistics and controlled studies to be reported.

He said the IBRF is structured so that only 10 percent of the funds will pay for necessary administrative costs and 90 percent will fund research and treatment.

Other major, non-profit health organizations often spend 40 to 60 percent of their budgets on overhead, he said.

DeFina also said the foundation hopes to work with Morristown Memorial Hospital to develop a new brain injury and autism center for children.

DeFina was raised in Brooklyn, N.Y. and moved to Chester in 2002.

He lives with his daughter, Alexandra, a freshman at Mendham High School.

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