Elliot Gavin Keenan	Nathan Kopp
Priyanka Shah	Karen Chenausky
Christine Ochoa Escamilla	Dorothea Floris
Sweta Ghai	Donna Werling

IMFAR Travel Grantees

ASF Fellow Karen Chenausky with IMFAR Travel Grantees Sierra Brown, Priyanka Shah, and Scott Jackson.

INSAR Advocate of the Year Award

	INSAR president Dr. Geri Dawson (right) presenting the award to Alison Singer.

This year's INSAR Advocate of the Year Award was given to Alison Singer, President and Co-Founder of the Autism Science Foundation, for her tireless work as an advocate and her influence on autism research.  In accepting the award, Alison called on the autism community to  ensure that the needs of ALL individuals on the spectrum are met, and urged people to consider  adopting a new term for those most severely effected  by autism; a term that specifies a clearly-defined cluster of  symptoms and points toward a compendium of interventions and supports. "Research has revealed how incredibly heterogenous autism is; to use a single word to describe it is a disservice to the knowledge we have gained and to the people we love. The reality is that the current use of the word "autism" may, unintentionally, be depriving many people of the services, attention, help and supports they need because the word "autism" lacks specificity."

 

First INSAR "Policy Brief" Awarded to ASF Team 

IMFAR President Dr. Geri Dawson announcing the recipients of the 2017 INSAR Policy Brief Award, the first of its kind.

IMFAR president Dr. Geri Dawson announced that the Autism Science Foundation , Curtin University, Stony Brook University and the Karolinska Institute will be the recipients of the first INSAR  award to support the development of a policy brief in autism. The project will focus on employment in people with autism.  The team will conduct a thorough review of existing literature; develop and disseminate a survey in Western Australia, Sweden and the United States to identify needs, opportunities and gaps in this area; and hold three stakeholder meetings to hear from individuals with autism, their families, employers and government officials. This October, the group will be meeting to draft the policy brief. When the survey is ready, it will be distributed by the Autism Science Foundation. Stay tuned.

 

Special Interest Group Co-Organized by ASF

On Saturday morning, ASF and UCLA co-organized a special interest group entitled "Promoting partnerships between patient advocacy groups and researchers to improve autism

	SIG attendees discussed  biorepositories and preclinical studies, research registries and clinical trial consortia.

research." Through advances in genetic testing, scientists have discovered multiple rare gene variants that cause autism spectrum disorder (ASD). In order to create communities and accelerate our understanding of these disorders, affected families have established Patient Advocacy Groups (PAGs). These include the Dup15q Alliance, the Phelan-McDermid Syndrome Foundation, Tuberous Sclerosis Alliance, FRAXA Research Foundation, Simons VIP Connect, and the Rett Syndrome Research Trust. These PAGs have come together in an alliance called GDAAC, but in order to increase communication between these PAGs and researchers/clinicians who study and care for these populations, a SIG was organized during IMFAR, led by ASF Chief Science Officer Dr. Alycia Halladay. During the SIG, the attendees broke out into different groups that focused on biorepositories and preclinical studies, research registries and clinical trial consortia. The conversation provided insight into challenges and possible shared solutions across these different disorders as they relate to autism. The group also discussed new ways researchers can partner with these organizations to help families.