The Full Story
Team Tourette at the NYC Marathon
Three Team Tourette Runners sported teal in this year's NYC marathon!
Carrie Rodman
At the age of 5, our first child, (now 10-year-old) daughter Livi, was officially diagnosed with Tourette Syndrome while in Kindergarten (during the COVID pandemic in 2020). While this diagnosis was something that was anticipated and somewhat of a relief to finally receive, it was nonetheless disheartening, stressful, and anxiety-inducing.
We did our research and found out as much as we could about TS, her co-occurring conditions, non-medicine therapy options, and how we could learn to best support Livi as she gets older. Being a kid is difficult enough but adding in the stigma, criticism, and bullying that often goes along with a medical condition that is visible to the world and uncontrollable can be traumatic.
Being a parent is tough. Being a parent to a neurodiverse child adds another dimension of challenges. One way I can help show Livi how much I support her, and the entire TS community is by running a marathon to raise money for TAA.
What better way to join 2 of my greatest loves, running and family?!
Renee Glick
Since I moved to New York City almost 20 years ago, I’ve wanted to run the marathon. Not A marathon but THIS marathon. I love the energy, the grit, the rallying of a city to support the range of people and abilities and life experiences that collect into the streets the first Sunday of November.
This year I have the privilege of being one of 50,000 people running this route because of the equally incredible privilege of raising money to support the work of the Tourette Association of America (TAA).
The TAA has been an amazing resource to my dear friends Rachel and David since 2023 when their son Stoney was diagnosed with Tourette. Being side-by-side with them throughout this process as a part of their family network, I have seen how the TAA has transformed what felt like a daunting reality into one that feels possible to navigate.
TAA organized a conference this year that gave Stoney a chance, for the first time ever, to meet other people living with Tourette. The change in him was almost immediate: he was more confident, more calm. TAA hosted a free support group for Rachel where she shared support and strategies with other parents, and came to better understand the Tourette brain and how to parent it through the excellent presentations by the expert therapist. TAA provided valuable resources for Stoney‘s special education teachers at school, who had never had a student with Tourette before. School went from being a difficult place for Stoney to being a place where he could thrive.
With an overall target of $4500, support of any amount–from $5 to $500 to $1500–continues to fund these resources.
As an honorary auntie to Stoney and his younger brother Sawyer, not only do I get an up-close view as they continue to grow and learn how to integrate the impact of Tourette’s in their lives, but I also get to participate in their interests and curiosities–to discuss every Arsenal stat and Eagles’ play, and to build endless playlists of Beyonce and Taylor Swift’s greatest hits.
Every mile and every dollar is for these types of joys–for giving kids, especially these two fantastic ones, the resources they and their families need to be the most thriving versions of themselves.
Megan Speck
At the age of 6, I received a diagnosis of Tourette Syndrome after months of my parents taking me to neurology specialists in New England. I remember feeling out of control of my body at times, and frustrated by the lack of ability that I had to stop body movements, eye twitches, vocal noises, etc.
My tics have been a steady factor in my life for the past 29 years. While I will go through periods of time that they don’t impact me and my ability to function, there are times when they do the complete opposite and are debilitating. They have remained manageable, and at times unnoticeable, for the past 10 years. However, I have had a reoccurrence in symptoms for the past 18-24 months and have dealt with management through a variety of medication treatments and neurology visits. I’m often left with muscle pain and tremors from the fatigue of having repetitive uncontrollable muscle movements (tics).
This phase of my life has felt a bit different than my childhood where I was often embarrassed by them and what others might think of me. While these thoughts still surface occasionally, I’ve come to a place where I am working on embracing their presence in my life and what a life might look like without hiding and feeling shame.
Tourette Syndrome remains under researched and without treatment to completely eliminate symptoms. More importantly, the lack of education and awareness of TS leads to assumptions and judgements about what someone with TS appears like and the symptoms that they possess. My main goal is to help fundraise to spread awareness and to use my own story to demystify and increase support for those with a diagnosis of Tourette Syndrome! Thank you in advance for your support :)