SPARK Community Advisory Council
Date Published: June 4, 2020
The SPARK Community Advisory Council (CAC) was launched in 2017 to ensure that the voice of our community is reflected in our work. We currently have 55 members from across the country with autistic adults, parents, and professionals who work in the autism community represented.
SPARK is dedicated to equity, diversity, and inclusion, and strives to include the voices of all races and ethnicities on the CAC.
“I am an adult with autism, and I participate on the SPARK Community Advisory Council because I firmly believe that genetic research for autism can help people understand autism better, which will result in people becoming less afraid of autism, since it is human nature to fear what we do not understand.”
The CAC provides feedback on all areas of our work: recruitment, retention, and research. For example, they have provided insight on digital marketing campaigns, the clarity of messages, and on how to engage and retain families in the cohort. There are periodic and episodic feedback opportunities. Members are updated on study activities quarterly. Some CAC members have generously shared their stories through website articles and videos.
Staff and the CAC interact via phone, email, and videoconferences, though other opportunities arise occasionally.
“As a mom of a daughter with ASD, I joined the CAC in hopes that my voice can provide first-hand insights, which are often absent in clinical research studies. My purpose is to contribute however I can toward a more hospitable world for my daughter and the ASD community.”
Potential members are nominated by SPARK’s clinical site partners and SPARK staff to represent the diversity of the autism community.
“Being a part of the SPARK Community Advisory Council is one way that I give a voice to my non-verbal son and to my daughter, who also has autism. SPARK research is the key to helping families like mine and I am proud to be a participant.”
For more information on SPARK’s CAC, please view the SPARK Community Advisory Council Charter.