NJCTS Announces Passing of Founder and Beloved Leader, Faith W. Rice
“Faith’s spirit lives on and her love and work advocating for the TS community will always be remembered. Faith dedicated her life to ensuring those living with TS and the associated disorders could live full productive lives. Whether it was through educating others, investing in research, or offering words of hope to a family, she was there. Faith was committed to changing minds and changing lives. She will forever remain in our hearts.” – Patricia Phillips, NJCTS Executive Director
Faith W. Rice, founder and past executive director of NJ Center for Tourette Syndrome and Associated Disorders (NJCTS), passed away on Monday, March 22.
Faith became a Tourette Syndrome advocate when her son Kim began exhibiting signs of the disorder as a child. It took 10 years to get a diagnosis but even with that information she found that there were no resources for her son – few knowledgeable doctors, no family support and no network. Leaving her full time job at IBM, she set out to bring about change for her son, and for others facing a TS diagnosis.
Her journey to create quality programming for families living with TS and to bring awareness to the disorder led to the state of New Jersey funding her vision and, in 2004, establishing NJCTS – the nation’s first Center of Excellence for Tourette Syndrome.
Under Faith’s leadership, NJCTS trained tens of thousands of educators and medical professionals about Tourette Syndrome and its common associated disorders. She created a Youth Advocate program so children and teens with TS could learn how to advocate for themselves and others. In partnership with Rutgers, she created the NJCTS Tourette Syndrome Clinic and, perhaps her greatest legacy, the NJCTS Cell & DNA Sharing Repository which has propelled TS research forward in remarkable ways.
With as many as 1 in 100 individuals living with a TS or a chronic tic disorder, there is still much work to be done to raise awareness and decrease the stigma associated with TS. But from recruiting clinicians to go into schools and hospitals to educate professionals to partnering with Rutgers University and universities from around the world for the last 10 years on one of the most successful TS research projects to date, Faith led the way.
What families will remember the most about Faith will be the empathetic voice on the other end of the phone, her passion to advocate for them or their kids, and the unwavering support she gave them that she couldn’t find all those years ago.
NJCTS has created the Faith W. Rice Legacy Fund to ensure Faith’s work will continue on and will award a scholarship in her honor every June to a New Jersey high school senior with TS.