Autism Research & Advocacy related Biosketch

Download Biosketch here:  Portia Iversen Oct 2018

View Cure Autism Now videos here: CAN VIDEOS

In 1995, soon after our son Dov was diagnosed with autism, my husband Jonathan Shestack and I 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, we 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. I established CAN’s Scientific Review Council (SRC), 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. In 2007 CAN merged with Autism Speaks. I am now serving on the NIMH, National Advisory Mental Health Council through 2012.

I’ve served on a number of public and private research boards including as an NIMH grant reviewer, I’ve co-authored a number of research papers and have studied molecular biology and neuroscience in a variety of courses. I continue to participate in workshops and attend scientific meetings such as the International Meeting For Autism Research (IMFAR – which I founded several years ago), the Keystone Symposium on Autism, the Cold Spring Harbor workshop on Autism and the annual Society For Neuroscience meeting. I continue to give lectures and workshops both in the community and at academic institutions. I’ve been honored to receive a number of community awards in recognition of my role as an advocate for the advancement of autism.

My current advocacy efforts are focused on the long-neglected, nonverbal segment of the autism population. I initiated the ‘NIH Workshop on Nonverbal School-Aged Children with Autism’, held April 2010, Co-sponsored by the National Institute of Deafness and Communication Disorders and NIMH. The recommendations generated by this workshop lead to the announcement of an RFA in August 2010: “NIDCD and NIMH Announce Availability of Funds for Competitive Revision Applications for Targeted Research on Non-Verbal School-Aged Children with Autism (R01, R34 and P50) (NOT-DC-11-001)” http://grants.nih.gov/grants/guide/notice-files/NOT-DC-11-001.html

I published my first book: ‘Strange Son’ (Riverhead/Penguin) in 2007, which chronicles my experience with my son Dov who has autism and is nonverbal, focusing on the story of how he began to communicate for the first time at the age of nine.

I earned my BFA at the University of Illinois and went on to become a set decorator and art director for film and television, and later a writer for television; my entertainment career culminated with the winning of an Emmy Award after which I married and had three children. I currently live in Los Angeles with my husband Jon Shestack and our son Dov, who has autism.

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Accomplishments

Co-founder of the Cure Autism Now Foundation (CAN), 1995 – 2007
CAN, a nonprofit advocacy organization, was raising ten million dollars annually for autism research by February 2007, when the foundation merged with Autism Speaks.

Co-founder of the Autism Genetic Resource Exchange (AGRE), 1997 – present
AGRE is the first open resource gene bank for autism, making biological materials and clinical data available to the entire scientific community. AGRE is now the world’s largest resource for DNA and clinical data from families with more than one member with autism. Autism Genetics Resource Exchange (AGRE)

Founder of the International Meeting For Autism Research (IMFAR), 2000 – present

Founder of the Innovative Technology for Autism (ITA) initiative at CAN, 2002 -2009

Author of the book: ‘Strange Son’ (Penguin/Riverhead Books), 2007
This book tells the story of how my son who has autism and is nonverbal, began to communicate for the first time at the age of nine.

Appointed to the National Institutes of Mental Health (NIMH) National Advisory Mental Health Council (NAMHC), 2008 – 2012

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Public Service

Member NIMH National Advisory Mental Health Council (NAMHC)
20018 – 12012

Member Review Panel, RAND Systematic review of treatments for children with ASD
2008 – 2010

National Advisory Mental Health Council’s Interventions Workgroup (Member)
September, 2009

Stanley Nelson autism genetics project UCLA, (Community Advisor)
2008 – 2009

Autism Speaks, ‘High Risk/High Impact’ committee member,
‘Characterizing cognition in nonverbal individuals with ASD” (CCNIA)Initiative
(Founder and Chair of the CCNIA Initiative)
2007 – 2009

Department of Defense The Autism Spectrum Disorder Research Program
(Autism research grants reviewer)
2007

Autism Speaks, Scientific Advisory Committee (SAC)
(Autism research grants reviewer)
2007 – 2008

California Institute of Technology, Pasadena, California, Embryonic Stem Cell Research Oversight (ESCRO)
(ESCRO Committee member)
2006

Autism Genome Project, External Advisory Board
Genome Canada Project, Hospital for Sick Children, Ontario, Canada
(Advisory Board member)
2004 – 2008

Collaborative Programs of Excellence in Autism (CPEAs)/Studies to Advance Autism Research & Treatment (STAART) Centers, National Institutes of Mental Health
(CPEA/STAART Scientific Advisory Board member)
2004 – 2007

National Institute of Mental Health, Public Participant Grant Reviewer
(Autism research grants reviewer)
2000 – 2004

Co-Chair of the Scientific Review Committee (SRC), The Cure Autism Now Foundation
1999 – January 2007
The SRC was established in 1999 to compliment the CAN Scientific Advisory Board. Composed of family members who are directly affected by autism and who also have a background in science or medicine, the SRC determined the relevance of grant applications while the SAB determined their scientific merit. The SRC was modeled after the NIMH Advisory Council.

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Awards

The Etta Israel Community Advocate Award 2016 

International Society for Autism Research INSAR Advocate Award 2011: For Increasing Awareness About, and Fostering Research Into All Aspects of, Autism Spectrum Disorders

The Rick Weiss Humanitarian Award April, 2006: For commitment to accelerating the pace of biomedical research in autism through raising money for research projects, education and outreach.

The California Psychiatric Association Exemplary Family & Patient Award 2002: For Exceptional Advocacy on Behalf of the Mentally Ill

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Selected List of Presentations

UCLA, Perspectives in Autism Course
‘Non-verbal Autism, Personal Perspective’
(Guest Lecturer and Panel Member)
2014, 2015, 2016, 2017

Cold Spring Harbor Autism Workshop Week long immersive workshop covering all aspects of autism and autism research.
(Guest Speaker – three hour presentation on non-verbal autism)
June, 2007, 2009, 2014, 2015

National Institute of Mental Health Inter-Agency Autism Committee (IAAC) Meeting
‘Non-verbal Autism State of Research and Future Directions’ (Guest Presenter)
June 2014

National Institute of Mental Health Inter-Agency Autism Committee (IAAC) Meeting
‘Non-verbal Autism, Cognition and Communication’
(Presenter and Panel member – ‘Minimally Verbal Children with Autism’)
April 9, 2013

University of Southern California, Engineering and Autism:  National Workshop ‘Computational Approaches to Social Communication & Interaction Development in Autism’
(Panel member)
Fall Quarter 2012

University of Tel Aviv, 8th Annual Autism Conference, Israel
‘Rethinking Current Models of Non-verbal Autism’
(Keynote speaker, delivered multiple presentations and a hands-on communication workshop)
March 2011

The Mediterranean Institute for Life Science (MEDILS), Sisters of Mercy University Hospital of Zagreb, Pediatric Autism Clinic and the Mother and Child Association: International Scientific Congress on Early Diagnosis Intervention and Integration of Children with Autism Spectrum Disorders, Split, Croatia
‘Non-Verbal Autism: Communication, Research and Future Directions’
(Presenter)
October 2010

National Institute of Mental Health: ‘Workshop on Nonverbal School-Aged Children with Autism’ Co-sponsored by the National Institute of Deafness and Communication Disorders and the National Institute of Mental Health
‘Nonverbal Autism, the Forgotten Half of the Population’ 
(Presenter, I Initiated the meeting)
April 2010

UCLA, Current Issues in Applied Linguistics Course
‘Communicative Capacity of Low-Communicating/Non-Verbal Children with Autism Spectrum Disorders’
(Guest Lecturer)
Spring Quarter 2010

Touro College, Bureau of Jewish Education, Los Angeles
‘Non-verbal Autism and Communication’
(Keynote Speaker)
March 2010

University of Southern California, Viterbi School of Engineering Technology for Autism Spectrum Disorders Course
‘Nonverbal Autism, Technology and Communication’
(Guest Lecturer)
February 2010

Autism Speaks: Two Day Meeting on Characterizing Cognition in Nonverbal Individuals with ASD (CCNIA) II
(Two day Meeting which I initiated, organized and Chaired and was a Presenter)
August 2009

Chang Bing Show Chwan Memorial Hospital, ChungHua, Taiwan
‘Communication and Cognitive Capacity in Non-verbal Autism’ (Guest Lecturer, three hour presentation)
July 2009

National Taiwan Normal University, Taipei, Taiwan
‘Communication and Cognitive Capacity in Non-verbal Autism’
(Guest Lecturer, three hour presentation)
July 2009

Annual Academy of Neurology Meeting
‘Non-verbal Autism Overview and New Directions for Research’
(Presenter)
April 2008

Autism Speaks: Two Day Meeting on Characterizing Cognition in Nonverbal Individuals with ASD (CCNIA) I
(Two day Meeting which I initiated, organized and Chaired and was a Presenter)
June 2008

UCLA, Department of Anthropology
‘Non-verbal Autism: Rethinking the Model’
(Guest lecturer)
June 2007

Society For Neuroscience
‘Non-verbal Autism Overview and New Directions for Research’
(Presenter)
October 2006

IMFAR ‘Non-verbal Autism Overview and New Directions for Research’
(Presenter)
May 2006

University of Gotenberg, Sweden, First Annual Meeting on Autism,
‘Non-verbal Autism’
(Presenter)
September 2002

Many other presentations at advocacy and research meetings.

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Selected List of Publications

Journals Articles:

Autism overflows with syntheses.
Belmonte MK, Bonneh YS, Adini Y, Iversen PE, Akshoomoff NA, Kenet T, Moore CI,
Simon HJ, Houde JF, Merzenich MM.
Neuropsychol Rev, June, 2009.

bonneh-crossmodal-extinction-autism-2008
Bonneh, Y., Ashmookoff, N., Belmonte, M., Iversen, P., Hirstein, W., Kenet, T., Pei, F., Simon, E., Houde, J., Merzenich, M.
Cognitive Neuropsychology, April, 2008

Nicotinic receptor abnormalities in the cerebellar cortex in autism
Lee M, Martin-Ruiz C, Graham A, Court J, Jaros E, Perry R, Iversen P, Bauman M, Perry E.
Brain. 2002 Jul;125(Pt 7):1483-95.

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.

A genomewide screen for autism susceptibility loci.
Liu J, Nyholt DR, Magnussen P, Parano E, Pavone P, Geschwind D, Lord C, Iversen P, Hoh J, Ott J, Gilliam TC.
Am J Hum Genet. 2001 Aug;69(2):327-40.

Cholinergic activity in autism: abnormalities in the cerebral cortex and basal forebrain.
Perry EK, Lee ML, Martin-Ruiz CM, Court JA, Volsen SG, Merrit J, Folly E, Iversen PE, Bauman ML, Perry RH, Wenk GL.
Am J Psychiatry. 2001 Jul;158(7):1058-66.

Autism: What does the future hold; what can we learn from the past; and what can we do right now?
Iversen PE
California Pediatrician Fall 2000

Abstracts:

Universal Features of Language and Communication in Autism
Spence, Iversen, Yuan JY, Alarcon M, Fedele, AGRE consortium, Cantor RM
International Meeting For Autism Research (IMFAR) 2003

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Education

Bachelor Degree, Fine and Applied Arts
University of Illinois, Chicago, Illinois

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Personal Information

I’ve lived in Los Angeles since 1981, I’m married to Jonathan Shestack and we have four children.