Meeting with Director of Projects and Policy Rare Opportunity to Bring TS to the Forefront

On Tuesday, October 21, 2003, Tourette Syndrome Association President Judit Ungar, along with Jeremy Scott, TSA government relations specialist, Susan Conners, TSA education specialist and TSA supporter Nancy Baker met at the White House with Anne Heiligenstein, Director of Projects and Policy to First Lady Laura Bush.

The meeting was in response to a written request by TSA to meet with the First Lady to discuss TSA’s missions and goals, and the challenges faced in raising awareness and educating about the disorder.

“Mrs. Bush, in her unending commitment to children and education, would be the ideal person to help promote and raise national awareness of Tourette Syndrome,” said Judit Ungar.

Mrs. Bush was unable to attend the meeting due to travel commitments, but Ms. Heiligenstein was extremely responsive and interested to learn about TSA’s education and advocacy programs. She was also updated on TSA’s commitment to reach out to educate underserved populations as well as doctors, healthcare workers and education professionals. 

Susan Conners provided personal accounts of not only living with TS herself, but her experiences being a teacher and having students with TS in her classroom throughout her 33-year teaching career.

In addition, Nancy Baker discussed her personal challenges of having a daughter with TS and dealing with her own family’s misconceptions about the disorder.  She illustrated how even those who are directly affected by TS have a lack of understanding about it and the struggle to educate the general public and reduce the stigma associated with having TS.

“The meeting was a huge success,” Judit said. “We would love for Mrs. Bush to become as much involved, as time allows her to be, in the cause and embrace TS.”

TSA continues to advocate for various legislation including fully funding the Children’s Health Act of 2000, the reauthorization of IDEA (Individuals with Disabilities Education Act), Mental Health Parity and the Genetic Information Nondiscrimination Act, just to name a few. For more information on TSA’s legislative actions and advocacy statements, visit the Public Policy section of our website.

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