16-year-old Madisonville High School student Stacy Fowler learned that she had Tourette Syndrome last year and has since worked tirelessly to educate the community about her condition.
“When we first figured out this is what I have, my parents did a lot of research and came across the Tourette Association of America and got involved quickly,” said Stacy, who just completed her sophomore year at MHS. “We started attending a chapter meeting in The Woodlands and learned that the Association picks a boy and a girl from Texas for an ambassadorship.”
After a strenuous application process, which had to include a fundraiser on Stacey’s part, she was chosen as an Ambassador along with Belmont native Haden Blanchard, who is 15.
What mostly stole the Association’s attention during Stacy’s candidacy was the fundraising effort from last year. Stacy raised over $650 selling blue bracelets with the words “Tourette’s Awareness” in white.
Her new position has opened a variety of possibilities for Stacy, including her first trip to Washington D.C. for training and advocacy in March. Fowler and other Ambassadors spoke with representatives about the importance of funding to the Centers of Disease Control (CDC) and the National Institutes of Health (NIH), which both work against a number of afflictions, not just Tourette Syndrome.
“The real training was when we had to go and talk to our representatives,” said Stacy. “The parents were supposed to step back and not say a word. Our main goal was to talk to them about funding for the CDC and NIH. Tourette’s is part of that, so if they fund it, they will be finding research for the Tourette Association but also things such as cancer, Parkinson’s, Huntington’s, Lupus and other conditions.”
Some of the offices Stacy and Blanchard visited belonged to U.S. Senators Ted Cruz and John Cornyn and U.S. Representative Kevin Brady. Fowler also visited the state capital on a different occasion to meet with Texas Representative Trent Ashby.
She also advocated for a telemedicine system that would allow more access to medical professionals for those in small towns.
“I have to drive all the way to Houston to see my doctor,” said Stacy. “This would help people in rural areas call or Skype their doctor and tell them what is wrong and find out what they need to do.”
On top of meeting Olympic Gold Medalist Anthony Ervin, who also has Tourette Syndrome, Stacy learned that every staff member she met with knew somebody impacted by at least one of the afflictions mentioned.
Her parents learned about the struggles of other parents who have children with Tourette Syndrome. Many of these struggles were familiar to Greg and Marcy Fowler, others were not.
“Something you learn is that a lot of parents with kids who have this end up having to homeschool them because they get bullied so much, cannot concentrate or their teachers do not know how to handle it,” said Marcy. “That is not the situation we have had here. I want (MHS) to know that what they are doing for Stacy is not the norm. They have gone above and beyond for her.”
Stacy had to miss a large portion of school during her freshman year, but MCISD worked with her to ensure that she could access her classes electronically and not have to repeat the year. She remained active in a number of activities including FFA and choir.
Her life will remain busy for the foreseeable future. While she is back from Washington, the real work as an Ambassador for the Tourette Association of America begins now.
“When you are an Ambassador, the leader of your state chapter can call you and tell you that you need to do a presentation at a certain school or organization,” said Stacy. “A lot of times, it will be because there is a kid there who has Tourette’s Syndrome and is either getting bullied or is not sure how to tell people about it. So you have to go in an explain to the kids and teachers what it is and you have to present it in a way that they will understand.”
Her first presentation came on Sunday at Broadway Church in Houston, where her grandfather Randy Fowler is the pastor.
While she has been busy between her trips to D.C. and Austin, Fowler has also managed to sell new white bracelets to the community and handed them out to the representatives she met with. She also sold tacos to elementary students in May and ran a table at the high school to spread awareness.
Tourette Syndrome is a neurodevelopment disorder that becomes evident in early childhood or adolescence. It is part of the spectrum of Tic Disorders and is characterized by motor and vocal tics. It is often hereditary, but is not in Stacy’s case.
“It is so hard for doctors to pinpoint an exact cause,” said Stacy. “There is not really just one cause. There have been more than one case of people getting inflammation in their brain that brings it on. There is not just one thing that can cause it.
The Fowlers would like to thank all those in the community for the donations and ongoing support. Tourette Syndrome Awareness Month lasts from May 15 until June 15. For more information, visit the Tourette Association of America online or email Stacy Fowler at firstname.lastname@example.org. You can also reach out for more information on having Stacy present to your organization.