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Biograpy - Portia Iversen

Portia Iversen

Author of the book ‘Strange Son' (Riverhead Books), 2007. (www.strangeson.com)

 
Founder of the Innovative Technology For Autism (ITA) program at CAN, 2002.
 
Founder of the International Meeting For Autism Research (IMFAR), 2000.
Co-founder of The Autism Genetic Resource Exchange (AGRE), 1997. (www.agre.org)
 
Co-founder of The Cure Autism Now Foundation (CAN), 1995. (now merged with Autism Speaks)

 

Ms. Iverson earned a BFA at the University of Illinois in 1976, then went on to become an art director and writer for film and television; her entertainment career culminated with the winning of an Emmy Award in 1989. In 1995, soon after her son Dov was diagnosed with autism, Portia Iverson and her husband Jonathan Shestack co- founded the Cure Autism Now foundation (CAN). The foundation soon became a driving force in growing the field autism research and a leader in raising awareness and funding. Soon after founding CAN, they established the Autism Genetics Resource Exchange (AGRE), an autism gene bank that was the first to provide open access to the entire scientific community and soon grew to become the world's largest. She also established CAN's Scientific Review Council, an advisory council modeled after the NIMH Advisory Council, whose members were made up of scientists and clinicians most of whom were also parents of autistic children. The SRC was responsible for ensuring that the research which CAN funded was relevant and reflected the urgency of those affected by the disorder. 

Ms. Iverson has also served on a number of public and private research boards including serving as an NIMH grant reviewer. She has co-authored a number of research papers and studied molecular biology and neuroscience. She continues to participate in workshops and attend conferences such as the International Meeting For Autism Research (IMFAR - which she founded seven years ago). Recently she was a lecturer and participant at Cold Spring Harbor's first autism workshop. Ms. Iverson has been honored to receive a number of community awards in recognition of her role as an advocate for the advancement of autism research and he have given talks about autism throughout the world. Her first book: 'Strange Son' (Riverhead) was published in 2007 and chronicles her experience with her son Dov, who has autism and is nonverbal, when he began to communicate for the first time at the age of nine. She founded the Descartes online community that same year, an online community for families with nonverbal children with ASD with over 1000 members.
 
Selected publications:
Cross-modal extinction in a boy with severely autistic behavior and high verbal intelligence. Bonneh, Y., Ashmookoff, N., Belmonte, M., Iversen, P., Hirstein, W., Kenet, T., Pei, F., Simon, E., Houde, J., Merzenich, M. Cognitive Neuropsychology, April, 2008
 
Autonomic responses of autistic children to people and objects. Hirstein W, Iversen P, Ramachandran VS. Proc R Soc Lond B Biol Sci. 2001 Sep 22;268(1479):1883-8.
 
The autism genetic resource exchange: a resource for the study of autism and related neuropsychiatric conditions.Geschwind DH, Sowinski J, Lord C, Iversen P, Shestack J, Jones P, Ducat L, Spence SJ. Am J Hum Genet. 2001 Aug; 69(2):463-6.