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There is no place to hide for those who suffer from Tourette Syndrome (TS). You may have noticed someone exhibiting physical and/or vocal tics, such as jerky body movements, facial grimacing, or hair pulling; or maybe someone that grunts, screeches, or blurts out inappropriate language - these are just a few examples of the challenges caused by TS. The energy required, all day, every day, in an attempt to control these never-ending, involuntary movements makes life both difficult, frustrating, and exhausting.Tourette Syndrome is often compounded by Obsessive Compulsive Disorder (OCD) and/or Attention Deficit Disorder (ADD), which simply increases the challenge to enjoy daily life.
I have both TS and OCD with a smaller 'case' of ADD. I was diagnosed after surgery to remove a malignant brain tumor, followed by seven weeks of radiation treatment, in 1990. Prior to cancer, my tics and obsessions were minimal (compared to today).
Due to the difficulty, frustration, social isolation, and teasing that children with TS, and these other affiliated conditions, must suffer through and endure, I created, and currently direct, a camp for these kids. Camp du Ballon Rouge is a place where, for a few days, these children can be themselves, 'regular' kids, and forget about having to focus on their tics...or the need to control them. A place to be with others 'like' them and a place to learn from each other. These kids have the opportunity to participate in activities where they are otherwise not welcome - challenges such as a ropes course with zip line, horseback riding, and fishing - as opposed to the challenges of their daily life. Camp du Ballon Rouge is not just a place to have fun. It is a place where we are trying to teach these children crucial life skills (i.e., self confidence/esteem, communication, social) so they can live a productive life.
Camp du Ballon Rouge is an annual weekend camp, held at Camp For All, in Burton, Texas. We just celebrated our 13th year and are planning on inviting newly diagnosed children to next year's camp. Based on parent feedback, camp is the highlight for these children. It is a unique outdoor experience that offers acceptance, provides hope, and promotes discovery.
Our camp is free to attend, as many of the children's families are overburdened with medical costs. Again, due to the amazing benefits our campers experience, it is very important to invite more children to attend. It currently costs $350 for a child to attend our camp. I've set my fundraising goal at a level where we will be able to invite 25 newly diagnosed campers.
Tri for Tourette will make this happen!
Tri for Tourette is a campaign I began in 2014, in partnership with the Tourette Syndrome Association of Texas, www.tourettetexas.org, a non-profit organization, to raise funding to provide the opportunity for more children, living with TS, to attend camp. I also want these children to observe, through my own actions, they too can accomplish their goals and desires (even while living with TS).
In 2015, I will be competing in three ultra-distance triathlons - IRONMAN Texas, IRONMAN Boulder, and IRONMAN Arizona. While completing an ultra-distance triathlon is a physical challenge, comprised of a 2.4 mile swim, followed by a 112 mile bike ride, and concluding with a 26.2 mile run, it are my tics and obsessions, throughout the race, that truly make these events extremely challenging.
By donating to my efforts, through Tri for Tourette, you are directly improving the lives of additional children who are suffering from TS by providing them the opportunity to attend our camp. Currently, it costs $350 for a child to attend a weekend at camp. Please remember, TSA Texas can only fund our camp by your generous donations. We welcome, and appreciate, gifts of any amount.
If you would like to see what your generosity provides, or to learn more about Camp du Ballon Rouge, please 'click' on the links below.
Camp du Ballon Rouge page on TSA of Texas website: http://www.tourettetexas.org/TSACamp.html
Tri for Tourette FaceBook page: https://www.facebook.com/TriForTourette?fref=ts
I am grateful to your for your support and generosity to help others. You are always welcome to come out to camp to see what a positive impact we are having on these children.