United Nations World Focus on Autism

OMRDD Takes Part in United Nations World Focus on Autism

NEW YORK, NY (09/26/2008; 1506)(readMedia)-- Representatives from the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) marked the opening of the 63^rd United Nations General Assembly in collaboration with an international call to attention to the global concern of autism.

OMRDD’s Executive Leadership, Executive Deputy Commissioner Max Chmura, Dr. W. Ted Brown, director of OMRDD’s Institute for Basic Research in Developmental Disabilities (IBR) in Staten Island and Dr. Eric London, Head of the Autism Treatment Laboratory at IBR, attended the event earlier today, in support of, and preparation for, World Autism Awareness Day on April 2, 2009.

The United Nations World Focus on Autism event, held at the United Nations Millennium Hotel, was hosted by Suzanne Wright co-founder of Autism Speaks, and moderated by Christiane Amanpour, CNN’s chief international correspondent.

IBR is recognized worldwide as a leader in autism research. In May, IBR scientists were awarded a $1.9 million program project grant from the federal Department of Defense Autism Spectrum Disorders Research Program (ASDERP) that is funding a first-of-its kind study to examine how autism changes the brain throughout life. In addition, IBR recently took part in the International Meeting For Autism Research (IMFAR), held in London, where scientists presented to a worldwide audience of peers. IBR has also partnered with many global autism awareness and research organizations such as Autism Speaks, Cure Autism Now, Queens University in Ontario, Canada and the National Alliance for Autism Research. Dr. London serves on the board of Autism Speaks and chairs several committees; Dr. Brown serves on the Autism Speaks scientific grant review board, among others.

“I am pleased to have represented this agency and New York State at this prestigious event,” said Chmura. “New York State and OMRDD has been recognized as international leaders in the autism field through our progressive Autism Platform, as well as through IBR’s cutting-edge research that contributes to the treatment of the disorder. We are proud to have been invited to collaborate in this way.”

World Autism Awareness Day

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, which declares as April 2 World Autism Awareness Day (WAAD). The WAAD resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the developmental challenges they face.

OMRDD’s Autism Initiatives

In response to the growing autism crisis, OMRDD created a comprehensive autism platform in May 2008 to combat autism on multiple fronts: research and training, treatment and family and individual supports.

The autism platform encompasses several key initiatives, including the newly created Autism Consortium and Interagency Task Force on Autism. The Autism Consortium will allow OMRDD to better address the needs of individuals with autism and Autism Spectrum Disorders (ASDs) by pooling research and treatment resources.

The Interagency Task Force on Autism calls on a team of state agencies, who support children and adults with autism, to work collaboratively to provide services and supports and guide the implementation of the autism platform. The task force will be co-chaired by OMRDD and the State Education Department.

The OMRDD Autism platform consists of:

→ Increasing research;

→ Translating research results into improved treatment options;

→ Uniting public, private and nonprofit interests to establish statewide research, evaluation and treatment capacity;

→ Networking across State Government to create a “People First” system of comprehensive services; and

→ Providing information to families.

ASDs are on the rise nationwide. The Centers for Disease Control and Prevention have reported that within some communities, ASD now affects one in every 150 children. OMRDD currently supports more than 16,000 people in New York State with autism or ASDs.

The New York State Autism Consortium, under the leadership of OMRDD’s research arm, IBR, has created an autism “brain trust” in New York State, gathering many of the state’s finest scientific minds to collectively research, treat and address autism and ASDs.

OMRDD supports more than 120,000 people with developmental disabilities; of whom 16,000 people in New York State have autism or ASDs. Autism is a neurodevelopmental disorder characterized by abnormalities in the development of social interaction and communication and by repetitive and/or ritualistic behaviors. Studies have shown a substantial increase in children diagnosed with autism over the past 10 to 20 years; approximately 1 in 150 births. Autism could impact an estimated 4 million Americans in the next decade.

About OMRDD

The Office of Mental Retardation and Developmental Disabilities (OMRDD) provides high-quality services, supports and advocacy to approximately 120,000 individuals with developmental disabilities and their families. OMRDD works with a network of nearly 800 not-for-profit providers to help people with developmental disabilities lead richer lives that include meaningful relationships, good health, personal growth and productivity and homes in their communities.

autism

New Autism Genetic Data Released By John Hopkins and Autism Consortium

More detailed autism genetic data was released yesterday in a coordinated effort by the Autism Consortium and Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine. As stated in the Autism Consortium and John Hopkins press releases the data was released to the world research community prior to publication in an effort to speed up research into causes of and cures for autism.

It is also interesting that parent driven organizations like Autism Speaks have been directly involved in the organization of this massive effort. The distrust of parent autism advocates and autism advocacy organizations demonstrated by Canada's CIHR does not seem to be shared by similar American agencies. The Autism Consortium DNA samples for the genome wide scans of DNA variation were provided by the Autism Genetic Resource Exchange (AGRE), a program of Autism Speaks.

The Autism Consortium consists of researchers from from Beth Israel Deaconess Medical Center, Boston Medical Center, Boston University, Boston University School of Medicine, Broad Institute of MIT and Harvard, Cambridge Health Alliance, Children’s Hospital Boston, Harvard University, Harvard Medical School, Massachusetts General Hospital, Massachusetts Institute of Technology, McLean Hospital and Tufts-New England Medical Center. The Autism Consortium web site can be found at www.autismconsortium.org. More information about the Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine can be found at http://www.hopkinsmedicine.org/geneticmedicine/

From the Autism Consortium press release

Autism Consortium releases data on genes involved in autism to researchers worldwide

BOSTON – OCTOBER 22, 2007 – The Autism Consortium, a group of researchers, clinicians and families dedicated to radically accelerating research and enhancing clinical care for autism, announced today that it has completed the first genome scan for Autism Spectrum Disorders (ASD) through its Autism Gene Discovery Project and has released the reference data set to a database that autism researchers around the world can use. The scan was conducted using new, high resolution technology developed by Affymetrix on genetic data from more than 3,000 children with ASD and their families.

“Today’s release of genetic and phenotypic data on autism marks a significant achievement for the autism research community,” said Thomas Insel, Ph.D., Director of the National Institute for Mental Health. “Progress in finding the causes and cures for autism spectrum disorders rests in large part on improving the rapid access and sharing of data and resources That the Consortium is making the data available to the scientific community even before its own researchers have fully analyzed the information, demonstrates their high degree of commitment to and leadership in advancing autism research.”

Along with complementary data generated by Dr. Aravinda Chakravarti at Johns Hopkins and provided to the NIMH this week, these data provide the most detailed look to date at the genetic variation patterns in families with autism.

From the John Hopkins Press Release:

Hopkins Researchers Release Genome Data on Autism; Most Detailed Look at Genetic Contributions to Date

BALTIMORE, Oct. 22 (AScribe Newswire) -- Researchers at Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine today are releasing newly generated genetic data to help speed autism research. The Hopkins data, coordinated with a similar data release from the Autism Consortium, aims to help uncover the underlying hereditary factors and speed the understanding of autism by encouraging scientific collaboration. These data provide the most detailed look to date at the genetic variation patterns in families with autism.

"Autism is a difficult enough genetic mystery for which we need all of the best minds and approaches to help unravel the role of genes in this neuropsychiatric illness," says Aravinda Chakravarti, Ph.D., director of the Center for Complex Disease Genomics at Hopkins.

Chakravarti and his team analyzed whole genomes from 1,250 autistic individuals, their siblings and parents; these samples were collected across the United States by many researchers under the aegis of the National Institute of Mental Health, part of the National Institutes of Health. Mark Daly, Ph.D., a senior associate member of the Broad Institute of Massachusetts Institute of Technology and Harvard, is part of the Autism Consortium which released data acquired collected similarly from 3,000 individuals who are either affected by autism spectrum disorders (ASD) or are family members of individuals with autism.

"We're releasing raw genotype data so that other qualified researchers can take a look at it even as we're still beginning our own analysis," says Daly.

"It is really something of a landmark to have pre-publication data from our laboratories available to autism researchers. We are doing so in the spirit of the human genome project where such data releases were critical to progress long before final results were available. We are carefully looking at our collaborative findings as we continue to search for definitive information about which genes are important in causing autism spectrum disorders," says Chakravarti, who has collaborated with Daly for many years. "We hope to identify the most likely candidates over the next few months."