For Women’s History Month, the Tourette Association of America would like to learn more about the incredible women in the Tourette Syndrome and Tic Disorder community.
Use the form below to share the name of a woman that has made an impact in your life – and let us know why! Your submission may be featured on the TAA’s social media pages!
Heather Ramsey's Story
“As we celebrate Womens History Month, I’m proud to recognize my mother, Heather Ramsey, for her tireless efforts in helping those with Tourette Syndrome, pursuing ways to improve their quality of life, and educating the community to reduce the stigma and increase understanding.
My mother was not diagnosed with Tourette until 10 years ago when my brother, Jacob, was. I am most proud of my mom for persevering despite the stigma and bullying that accompanied growing up without a Tourette diagnosis.
Like others, her situation was, in large part, due to the lack of knowledgeable doctors and the stigma associated with receiving a Tourette diagnosis. After being bullied for her tics, she forced herself to learn ways to hide them. Knowing what that was like, she was determined to not let that happen with my brother and me.
The Tourette Education Conference in 2010 was the first of many for our family to attend. My mother has always said that was a life-changing experience, learning vital information about Tourette, how to work with schools, and how to find appropriate medical care. What made it priceless were the people she met and the connections she made – finding her tribe.
After reading The Purpose Driven Life in 2011, my mom was inspired to find her purpose. During that time, our family was struggling with managing my brother’s Tourette, learning of my Tourette diagnosis, and trying to work with the school to best meet our educational needs. In the midst of that storm, she realized that she had found, and was, in fact, fulfilling her purpose.
Realizing the resources for Tourette support and information were severely lacking in our area, she decided to be the change. She encouraged both my brother’s and my desire to become Youth Ambassadors and then supported us after the @TAA selected Jacob in 2012 and me in 2016. She created the Tic Talk Tour as a way to share our family’s advocacy efforts and Jacob’s and my Youth Ambassador activities as well as provide information on social media for others who have Tourette.
After connecting with other Tourette families in our area as well as in her native state of South Carolina, she created the Greater Carolinas Tourette Group for @TAA. She services families in both states, providing education, resources, and support. She works with schools to provide teacher training on Tourette, sometimes driving two hours to attend an IEP meeting so she can provide Tourette information and explain the facts for better understanding.
She coordinates meetings and outings for families, traveling throughout both states and vowing never to give up, even if only one person attends. Throughout the summer and fall months last year, she burned up the highway, traveling to SC to work with Lexington County Sheriff’s Department and Richland County Sheriff’s Department.
She provided training to deputies and SROs on Tourette and discussed ways law enforcement can have a positive impact on those with Tourette. She emphasized remembering that Tourette tics may resemble behavior of someone partaking in nefarious activities, so when they hear hoof beats, think zebra not horse.
She pursues opportunities for training through webinars, in-person seminars, and conferences. My doctor says mom’s the only person she knows who has Continuing Medical Education credits but isn’t a doctor. She’s really excited to have been selected as a presenter for the National Conference. Knowing how that singular experience at the conference changed her life in 2010, I believe it’s only fitting she can now help facilitate that opportunity for others.
We joke in our family that my mom is the only person we know who can bring the topic of Tourette into every conversation. She believes you never know when or where you will reach someone in need, and by sharing our Tourette journey and talking about Tourette, we can help others and reduce the stigma.
It is not uncommon to hear my mom clicking away on the keyboard at 1 am, writing to members of Congress about needing their support for Tourette initiatives or responding to emails from families who need support and resources. She will make teal awareness ribbons while watching TV and isn’t afraid to get her hands dirty, sorting recycled packaging to raise money for our support group through TerraCycle.
She’s always told us to accept our Tourette, to embrace it, but to know it doesn’t define us. It is just one of the many things that make me, me. Her belief to achieve great things is to be unique and just. After all, normal is a setting on the dryer and fair is where you ride rides and eat cotton candy.” – Jordan, Youth Ambassador