12-24-2004, 04:13 PM
I just found out the temple grandin was an original member of the board of NAAR?
is she still there? and why did she do it?
---------------original story------------------------
http://www.pacpubserver.com/new/news/4-3...utism.html
Fighting to put autism in retreat
Forming a successful charity to further fight on autism
Two families draw on special reserves to further the battle
By Christian Kirkpatrick
The Princeton Packet
Monday, April 30, 2001
The National Alliance for Autism Research is an organization on the move.
Begun in the basement of Eric and Karen Margulis London, NAAR has outgrown not just its founders' house but its offices in Research Park in Montgomery. It recently moved to a suite, also in Research Park, that is more than three times larger.
The new offices will provide room for additional staff and the stacks of paper that grow with NAAR's success.
The Londons established NAAR seven years ago to raise and distribute funds for biomedical research on autism's causes, prevention, treatment and cure. The couple plunged into the world of autism when their first child, Zachary, was diagnosed with it nearly 11 years ago.
Troubled by the seeming disinterest in conducting research on autism, Karen London formed the National Alliance for Autism Research. She is shown with her son, Zachary, 13, who suffers from autism.
Troubled by the seeming disinterest in conducting research on autism, Karen London formed the National Alliance for Autism Research. She is shown with her son, Zachary, 13, who suffers from autism.
Staff photo by Frank Wojciechowski
Ms. London left her legal practice to devote herself to the toddler's development. Her husband, a psychiatrist, reviewed the scientific literature for insight into their son's condition but came up virtually empty-handed.
Over the next few years, the Hillsborough residents said, they were troubled by the research community's disinterest in autism. Why were there no drugs to help autistic patients, they wondered. Why was no one talking about autism at the major psychiatry meetings Dr. London attended? Why were neuroscientists not studying the condition? Why was there no organization to promote research?
The answer — to the last question at least — seemed to be: because the Londons had not yet created it.
By now, Ms. London had stayed at home for about five years with Zachary, who was attending the Princeton Child Development Institute in Lawrence Township. Zachary's younger sister, Rachel, was developing well and was clearly not autistic. It was time for Ms. London to give her struggle with autism wider scope. It was time for her to establish NAAR.
As a former corporate attorney, organizing NAAR came easily to her. She assembled a board of trustees and an honorary board that included Wynton Marsalis, Temple Grandin, Joe Mantegna and Dan Marino to help her raise funds. She incorporated the organization, and she drafted and mailed its first requests for donations.
Her husband and a friend, who was researching autism, helped Ms. London select the organization's initial scientific advisory board. Today it has more than doubled in size and includes distinguished scientists in the neurosciences, molecular biology, immunology, epidemiology, psychopharmacology, brain banking and developmental pediatrics. Together, these experts evaluate and rank all requests for funds that come to NAAR.
In 1997, two years after NAAR was incorporated, it distributed $150,000, which it awarded in $30,000 grants to five researchers. Since then, the organization has grown considerably. In addition to its national headquarters in Montgomery, NAAR has established a regional office in Los Angeles and is setting up others in Pittsburgh, Long Island and south Florida.
Other parents who were crying out in the wilderness of autism research have joined the organization and are contributing their services. One such parent, Clarence E. Schutt, who is a professor of chemistry at Princeton University, became president of NAAR's board of trustees.
Over the years, NAAR has broadened and deepened its fund-raising efforts.
Bristol-Myers Squibb and a local family charity donated important seed money. Wynton Marsalis performed at a benefit event NAAR held at McCarter Theatre in Princeton.
For the past three years, a group of NAAR parents in New Orleans have organized fund-raisers there. Last summer in New York City, the organization honored National Football League Commissioner Paul Tagliabue with a gala that netted more than $500,000.
Even more significantly, NAAR began raising funds last year in a series of events intended to introduce the organization to the country and to allow it to disseminate information about autism.
At Mercer County Park in West Windsor and at venues in Pittsburgh, Los Angeles, Long Island, N.Y. and two in southern Florida, NAAR held walkathons for NAAR. The local walk raised $353,000. This year a walk in Bergen County will be added on June 10.
The central New Jersey walk, which will again take place at the Mercer County Park, will be held Sept. 30.
"NAAR chose the walkathon as its signature fund-raising event for some well-considered reasons," says NAAR President Ms. London. "There are many things that autistic children cannot do, but they can walk, and these events take full advantage of this fact," Ms. London explained. "At walkathons, autistic children can run and shout. Their families can come together in common purpose, and family members can ask their friends and co-workers to join in. Thus these events not only raise money for autism research, they raise interest in and support for it as well," she said.
Autism is a spectrum of developmental disorders that compromise a person's ability to acquire social skills, learn to communicate and develop an imagination. Autism can also dramatically limit a person's interests and activities.
The severity of symptoms range dramatically. At one end are those people who never learn to talk and who live in nearly complete self-absorption. At the other end are people, like the scientist and author Temple Grandin, who excel in their professions but find common social interactions puzzling.
No one knows what autism is or how it develops. But it affects nearly one in 500 babies, 400,000 to 500,000 people nationwide. More Americans suffer from autism than from cystic fibrosis or multiple sclerosis.
NAAR's fund-raising activities support research into such matters. Last year it provided $1.5 million, which funded 21 research projects. This year, largely as a result of its successful walkathons, NAAR has committed over $3 million to autism and research and resources, more than 25 projects, Ms. London said.
Grants are awarded to promising pilot studies that the organization hopes the National Institute of Health or other funding sources will eventually turn into major studies. Applications for NAAR grants come from scientists around the world.
According to Professor Schutt, NAAR's research efforts are focused in five areas. The first is the search genetic targets for pharmaceutical companies to develop medications.
Scientists do not know what goes wrong in a person's body to prompt the onset of autism. By examining the results of the Human Genome Project, scientists hope to discover which genetic mutations result in autism. This knowledge should spur the development of drugs to ameliorate the effects of these mutations.
The second area of research is related. It is the collection and examination of donated tissue.
"We can see what autism is behaviorally," comments Professor Schutt, "but we don't know what it is biomedically. NAAR-funded research has led to breakthroughs in understanding the cellular and molecular basis of autism."
The third area of research is learning about the neurological basis of human communication. Researchers are using MRIs and other advanced tools to understand how the brain perceives and interprets human communication and how this process breaks down in autistic people.
NAAR also is searching for possible environmental causes of autism. It led the call for the Centers for Disease Control and Prevention to investigate the extremely high rate of autism in Brick Township.
Finally, NAAR is funding gene therapy in hopes that one day doctors may be able to repair mutilated genes in people with autism.
"Princeton University has been extremely supportive in our efforts," notes Professor Schutt, "as have local donors and pharmaceutical companies."
The good news about NAAR is that it is professionalizing, moving from a group of dedicated parents to a nationwide organization with a worldwide reach.
is she still there? and why did she do it?
---------------original story------------------------
http://www.pacpubserver.com/new/news/4-3...utism.html
Fighting to put autism in retreat
Forming a successful charity to further fight on autism
Two families draw on special reserves to further the battle
By Christian Kirkpatrick
The Princeton Packet
Monday, April 30, 2001
The National Alliance for Autism Research is an organization on the move.
Begun in the basement of Eric and Karen Margulis London, NAAR has outgrown not just its founders' house but its offices in Research Park in Montgomery. It recently moved to a suite, also in Research Park, that is more than three times larger.
The new offices will provide room for additional staff and the stacks of paper that grow with NAAR's success.
The Londons established NAAR seven years ago to raise and distribute funds for biomedical research on autism's causes, prevention, treatment and cure. The couple plunged into the world of autism when their first child, Zachary, was diagnosed with it nearly 11 years ago.
Troubled by the seeming disinterest in conducting research on autism, Karen London formed the National Alliance for Autism Research. She is shown with her son, Zachary, 13, who suffers from autism.
Troubled by the seeming disinterest in conducting research on autism, Karen London formed the National Alliance for Autism Research. She is shown with her son, Zachary, 13, who suffers from autism.
Staff photo by Frank Wojciechowski
Ms. London left her legal practice to devote herself to the toddler's development. Her husband, a psychiatrist, reviewed the scientific literature for insight into their son's condition but came up virtually empty-handed.
Over the next few years, the Hillsborough residents said, they were troubled by the research community's disinterest in autism. Why were there no drugs to help autistic patients, they wondered. Why was no one talking about autism at the major psychiatry meetings Dr. London attended? Why were neuroscientists not studying the condition? Why was there no organization to promote research?
The answer — to the last question at least — seemed to be: because the Londons had not yet created it.
By now, Ms. London had stayed at home for about five years with Zachary, who was attending the Princeton Child Development Institute in Lawrence Township. Zachary's younger sister, Rachel, was developing well and was clearly not autistic. It was time for Ms. London to give her struggle with autism wider scope. It was time for her to establish NAAR.
As a former corporate attorney, organizing NAAR came easily to her. She assembled a board of trustees and an honorary board that included Wynton Marsalis, Temple Grandin, Joe Mantegna and Dan Marino to help her raise funds. She incorporated the organization, and she drafted and mailed its first requests for donations.
Her husband and a friend, who was researching autism, helped Ms. London select the organization's initial scientific advisory board. Today it has more than doubled in size and includes distinguished scientists in the neurosciences, molecular biology, immunology, epidemiology, psychopharmacology, brain banking and developmental pediatrics. Together, these experts evaluate and rank all requests for funds that come to NAAR.
In 1997, two years after NAAR was incorporated, it distributed $150,000, which it awarded in $30,000 grants to five researchers. Since then, the organization has grown considerably. In addition to its national headquarters in Montgomery, NAAR has established a regional office in Los Angeles and is setting up others in Pittsburgh, Long Island and south Florida.
Other parents who were crying out in the wilderness of autism research have joined the organization and are contributing their services. One such parent, Clarence E. Schutt, who is a professor of chemistry at Princeton University, became president of NAAR's board of trustees.
Over the years, NAAR has broadened and deepened its fund-raising efforts.
Bristol-Myers Squibb and a local family charity donated important seed money. Wynton Marsalis performed at a benefit event NAAR held at McCarter Theatre in Princeton.
For the past three years, a group of NAAR parents in New Orleans have organized fund-raisers there. Last summer in New York City, the organization honored National Football League Commissioner Paul Tagliabue with a gala that netted more than $500,000.
Even more significantly, NAAR began raising funds last year in a series of events intended to introduce the organization to the country and to allow it to disseminate information about autism.
At Mercer County Park in West Windsor and at venues in Pittsburgh, Los Angeles, Long Island, N.Y. and two in southern Florida, NAAR held walkathons for NAAR. The local walk raised $353,000. This year a walk in Bergen County will be added on June 10.
The central New Jersey walk, which will again take place at the Mercer County Park, will be held Sept. 30.
"NAAR chose the walkathon as its signature fund-raising event for some well-considered reasons," says NAAR President Ms. London. "There are many things that autistic children cannot do, but they can walk, and these events take full advantage of this fact," Ms. London explained. "At walkathons, autistic children can run and shout. Their families can come together in common purpose, and family members can ask their friends and co-workers to join in. Thus these events not only raise money for autism research, they raise interest in and support for it as well," she said.
Autism is a spectrum of developmental disorders that compromise a person's ability to acquire social skills, learn to communicate and develop an imagination. Autism can also dramatically limit a person's interests and activities.
The severity of symptoms range dramatically. At one end are those people who never learn to talk and who live in nearly complete self-absorption. At the other end are people, like the scientist and author Temple Grandin, who excel in their professions but find common social interactions puzzling.
No one knows what autism is or how it develops. But it affects nearly one in 500 babies, 400,000 to 500,000 people nationwide. More Americans suffer from autism than from cystic fibrosis or multiple sclerosis.
NAAR's fund-raising activities support research into such matters. Last year it provided $1.5 million, which funded 21 research projects. This year, largely as a result of its successful walkathons, NAAR has committed over $3 million to autism and research and resources, more than 25 projects, Ms. London said.
Grants are awarded to promising pilot studies that the organization hopes the National Institute of Health or other funding sources will eventually turn into major studies. Applications for NAAR grants come from scientists around the world.
According to Professor Schutt, NAAR's research efforts are focused in five areas. The first is the search genetic targets for pharmaceutical companies to develop medications.
Scientists do not know what goes wrong in a person's body to prompt the onset of autism. By examining the results of the Human Genome Project, scientists hope to discover which genetic mutations result in autism. This knowledge should spur the development of drugs to ameliorate the effects of these mutations.
The second area of research is related. It is the collection and examination of donated tissue.
"We can see what autism is behaviorally," comments Professor Schutt, "but we don't know what it is biomedically. NAAR-funded research has led to breakthroughs in understanding the cellular and molecular basis of autism."
The third area of research is learning about the neurological basis of human communication. Researchers are using MRIs and other advanced tools to understand how the brain perceives and interprets human communication and how this process breaks down in autistic people.
NAAR also is searching for possible environmental causes of autism. It led the call for the Centers for Disease Control and Prevention to investigate the extremely high rate of autism in Brick Township.
Finally, NAAR is funding gene therapy in hopes that one day doctors may be able to repair mutilated genes in people with autism.
"Princeton University has been extremely supportive in our efforts," notes Professor Schutt, "as have local donors and pharmaceutical companies."
The good news about NAAR is that it is professionalizing, moving from a group of dedicated parents to a nationwide organization with a worldwide reach.