Sunday, April 10, 2016
Autism Speaks
Autism Speaks is an autism advocacy organization in the United States that sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public. It was founded in February 2005 by Bob Wright, vice chairman of General Electric, and by his wife Suzanne, a year after their grandson Christian was diagnosed with autism. In January 2008, child clinical psychologist Geraldine Dawson, Ph.D., became Autism Speaks's chief science officer. In April 2010, the organization named Yoko Ono its first "Global Autism Ambassador." Since its founding, Autism Speaks has merged with three existing autism organizations and raised millions of dollars for autism research. Since February 2009, Autism Speaks has used the Wubbzy character from Wow! Wow! Wubbzy! as a mascot. An Autism Rights advocate named Elizabeth Picciuto accused the organization of treating autism as a disease that needs to be cured rather than a difference that needs to be understood and accepted. On May 1, 2015 Bob Wright resigned as chairmen of the organization. He was succeeded by Brian Kelly who had served as Chair of the Audit and Family Services Committees for the organization and is co-founder of Eastern Real Estate LLC. Both Bob Wright and his wife Suzanne remain on the board as co-founders. On November 2, 2015 Suzanne Wright took a leave of absence following a diagnosis of pancreatic cancer.
Activities: Autism Speaks is an autism organization that, along with its predecessor organizations, has been a source of funding directed towards the causes and treatment of autism spectrum disorders; it also conducts awareness and outreach activities aimed at families, governments, and the public. In a 2006 press release, Autism Speaks stated as its goal "to accelerate and fund biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increase awareness of the disorder; and to improve the quality of life of affected individuals and their families".
Research: Autism Speaks and its predecessor organizations have raised public awareness for autism research, raised funds directly for research, and lobbied Congress to leverage the privately raised money with much greater public funds. From 1997 to 2006 their advocacy in the areas of treatment and environmental factors shifted research priorities in the U.S. from basic research to translational and clinical research, with less emphasis on the underlying biology and greater emphasis on putting what was known to practical use.
Autism Speaks supports research in four main areas:
-Etiology includes genetic and environmental factors that may cause autism. This research includes searches for autism susceptibility genes, animal models for autism, environmental toxins, and maternal viral infections.
-Biology studies cells, the brain, and the body. This focuses on brain development and includes the Autism Tissue Program discussed further below.
-Diagnosis includes epidemiology, early diagnosis, and biomarkers.
-Autism therapies include medication, behavioral, and psychological interventions. It includes treatments for co-occurring medical conditions in children which are unrelated to autism, such as sleep disorders and gastrointestinal conditions that may hinder behavioral interventions, along with treatments for older individuals, and complementary and alternative medicine.
Autism Speaks funds the Autism Genetic Resource Exchange (AGRE), a DNA repository and family registry of genotypic and phenotypic information that is available to autism researchers worldwide. The AGRE was established in the 1990s by a predecessor organization, Cure Autism Now. Autism Speaks funds the Autism Tissue Program, a network of researchers that manages and distributes brain tissues donated for autism research. These donations are rare and are a vital component of research into the causes of autism. Autism Speaks supports the Clinical Trials Network, which focuses on new pharmacological treatments. It also supports the Toddler Treatment Network, which develops new interventions for infants and toddlers. Autism Speaks believes that vaccines have been shown to be safe for most children and are important for preventing serious diseases such as measles and mumps. It recognizes that some individuals may have adverse reactions to, or respond poorly to, vaccines, and advocates research into identifying any subgroups of such individuals and mechanisms behind any such reactions. This has strained relations between the Wrights and their daughter Katie, the mother of an autistic boy. Katie believes her son's autism was caused by thiomersal, a preservative that was formerly common in children's vaccines in the United States; no major scientific studies have confirmed this hypothesis. Since June 2014, Autism Speaks partnered with Google on a project called Mssng (Pronounced “missing.”) Previously known as The Autism Speaks Ten Thousand Genomes Program (AUT10K,) it is an open source research platform for autism that aims to collect and study the DNA of 10,000 families that have been affected by autism. The goal is to create the world’s largest database of sequenced genomic information of Autism run on Google’s cloud-based genome database, Google Genomics. In December 2014, the pair announced a launch that will allow worldwide access the research for further collaboration and genome analysis.
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