BY MILES Z. EPSTEIN
MATT ROSS IS PRESIDENT AND FOUNDER OF The Kids Foundation in Cresskill, New Jersey, a 501 (c) (3) non-profit organization that has raised more than $2 million for organizations that work with children with developmental disabilities and autism. With an ever-increasing number of children in the tri-state area being diagnosed ever y year, The Kids Foundation is providing financial support to organizations that provide education and therapy services for these children.
The Kids Foundation provided seed capital and helped to fund the development of Columbia University’s Developmental Neuropsychiatry Center, a world-class, multi-disciplinary clinic at the forefront of treating children with autism and other developmental disabilities. To date, the foundation has provided $250,000 in total support to the center.
Ross, who became an activist for autism causes after his son was diagnosed in 1999, is chairman of the board of the Paul Green School of Rock Music, LLC. He has held executive positions with Clear Channel Communications, Emmis Broadcasting and CBS Radio, and has been widely recognized as one of the most accomplished leaders in the media business. In fact, Ross was responsible for leading some of the most significant radio industry turnarounds in the country, including New York's Classic Rock Station Q104.3.
Today, he has committed himself to the mission of The Kids Foundation, and wants to make a positive contribution to the efforts to help children with developmental disabilities and autism. For this special section on “Caring for Kids with Special Needs,” COMMERCE magazine interviewed Matt Ross about his charitable efforts and The Kids Foundation.
COMMERCE: Why did you get involved in the effort to help children with autism? What was your motivation for helping others?
MATT ROSS: I moved back to New York in 1999 to work as General Manager of Q104.3 Radio. At the time, my son was recently diagnosed with autism and I had a sense that there was a massive need in the community for resources. I had the radio station resources to get the word out and begin the task of helping others.
Q.What is The Kids Foundation, and why is it important to you and others concerned about children with autism?
A.We raise money for organizations that provide therapy and educational services for children with developmental disabilities. Autism is the fastest growing disability among children and it is growing at epidemic rates. Since my son was diagnosed 10 years ago, the incidence rate has grown tenfold.
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Attorney David Gould and his wife, Lauretta Murdock, the
founder of a school in New Hyde Park, were not prepared for the phone call they recently received.
It was from a neighbor, someone they had never met. The caller was
frightened. The Gould's 16-year-old son, Bryan, had casually entered
the neighbor's house through an unlocked door, startling the home's
occupants.
"We were so lucky. God were we lucky," said Gould, of Port Washington.
Bryan was oblivious to the panic. At a time when home invasions are in
the public consciousness - and homeowners might be armed - Gould feels
fortunate his neighbors sensed something different about Bryan and were
able to coax him to give them his home phone number.
The teen is autistic, as is his 12-year-old brother, Connor.
Yet, the Gould/Murdock household is not atypical. Families nationwide
are facing the realities of autism, and sometimes with more than one
child. Murdock is one of Long Island's leading experts on the
condition, having established Mosaic, a New Hyde Park school for
autistic children.
No longer rare
Once considered rare, autism now affects one in every 150 children in
the United States, according to statistics from the federal Centers for
Disease Control and Prevention. Advocacy groups call it an epidemic
with an end nowhere in sight.
While many parents of autistic children - Murdock included - suspect
thimerosal, a mercury-based preservative used in routine childhood
vaccines as the disorder's cause, most scientists suspect it lurks in
the human genome, etched unmistakably in the DNA. Although thimerosal
has been removed from most routine vaccines, it still exists in trace
amounts in a few, according to the U.S. Food and Drug Administration.
"Since our sons were diagnosed we've never had a vacation. I can't
remember when either of us has gotten more than five hours of sleep.
It's exhausting," said Gould, who maintains a diary of his sons'
journeys through childhood. "Both parents are on board 24 hours a day
but it most often falls on the mothers. I see what my wife goes through
and it breaks my heart."
As Gould and Murdock worry about their sons, molecular geneticist
Michael Wigler, a few miles away at Cold Spring Harbor Laboratory,
believes he and his colleagues are on the cusp of understanding why
autism occurs and how some families can be affected more than once.
Wigler and his team have discovered how certain spontaneous genetic
mutations are relatively common and how they can be passed on by very
healthy parents to their offspring. Frequencies of the mutations
increase, the team found, as people age.
Last month, the Cold Spring Harbor team developed a grand unification
theory that stitched together previous notions about the genetics of
autism and demonstrated how DNA variants - often transmitted from
mothers to sons but not exclusively so - may lie at the disorder's
roots. Boys are three times more likely than girls to develop autism,
Wigler said.
He's calling on the CDC to use laboratory techniques similar to the
ones he and his Cold Spring Harbor collaborators have developed to
assess the prevalence of autism-related mutations in the U.S.
population. Screening would help provide guidance on the rate of
autism's growth in the population, he said.
Seeking genetic clues
Autism is a relatively new area of research for Wigler at the renowned
Cold Spring Harbor lab, where Nobel Prize winner James Watson, one of
the discoverers of DNA's helical structure, is chancellor. For nearly
three decades, Wigler explored the inner sanctum of cancer cells in a
series of studies that helped reveal some of the secrets about life
itself. Since 2003, he and his team have been studying autism, a
neurodevelopmental disorder, using the same kind of technology that
helped illuminate the genetics of cancer.
"I had been doing cancer research since I came to the lab in 1977 and
the basic method that we used in cancer was to ask what's different
about the genome of cancer compared with the normal genome?
"Many of the tools to do that were developed by me," Wigler said, "so we turned to those tools to ask questions about autism."
Since the 1940s scientists have been trying to understand the
complexities of autism, a brain disorder that begins in early childhood
and can range from mild to severe. Some people with the condition may
have an absence of language skills while others go on to earn college
degrees. The disorder is marked by poor social interaction,
obsessive-compulsive behavior and avoidance of affection and love.
Many who are severely affected never develop the skills of daily
living. Bryan Gould is considered high-functioning, yet he still
wandered into his neighbor's house uninvited. Experts now use the term
autism spectrum disorders to define the many ways in which the disorder
manifests.
Wigler's hunt for autism-related genes is fueled by a $13.7 million
grant from James Simons, the Long Island billionaire who heads
Renaissance Technologies Corp., the East Setauket enterprise that is
one of the world's most successful hedge funds.
Simons, a former chairman of Stony Brook University's math department,
has more than a philanthropic interest in autism. His daughter, Audrey,
has Asperger's syndrome, one of several autism spectrum disorders.
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