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Tyler's Hope for a Dystonia Cure Inc., is a non-profit 501(c) (3) organization committed to funding neurology research to prevent and cure DYT1 Dystonia; while creating awareness of this disorder.


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 This book is now available on Amazon.com

The Dystonia Patient  Book  found under Research 

  • Emphasis on a multi-disciplinary team approach to long-term management
  • Coverage of both adult and pediatric patients
  • Pearls and practical points within each chapter to guide the practitioner
  • Lists of resources and referral information for patients, families, and medical teams  

     

     

    Tyler’s Hope Tie  Found under Products

     

    Tired of wearing generic ties? Help support a great cause by sporting a classy 100% silk necktie with the Tyler’s Hope logo. Only $40

     

    Sunglasses Found under Products

     

    With summer and Gator football season rapidly approaching, protect your eyes by buying the NEW Tyler’s Hope sunglasses! Available in Iron, Blue, Black and Pink.

     

     

     

  • Welcome To Tyler's Hope
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    Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.

    Progressional Diary
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    June 29th, 2009

    It was a good weekend with the family. We had the 2nd annual Tyler's Hope Poker Run on Saturday and 70 motorcycles showed up. The kids all had a blst sitting on some of the motorcycles, listening to the band, and playing in the field. I particularly liked watching Luke eat ribs. The Mustangs baseball coaches(Tyler's team) contributed the food and cooked it for us.

    Samnatha has been compalining of pain in her back. This really scares me because of all the symptoms that I see dystonia cause, the back issues are horrible. Sam's back pulls so much at times that it jolts her out of her seat. It is not very frequent right now but we are watching it closely.

    Tyler and Samantha had botox injections last week and they seem to help a little now. Tyler has had the dystonia progress a little into his neck. He got some botox injected into his shoulder as well as his wrist last week. Sammy had injections in both of her lower legs. Sammy received 300 units of botox this timeand did not complain about the injections.

    Tyler goes in to get programmed today at 2pm. Luke is still taking swim lessons. Sammy is getting very good at multipilcation tables. Michelle had to get glasses to read. Gator and Tebow (our labs) are terrorizing everyone right now.

     


    More about Dystonia
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     Carrie Siu Butt is running the Chicago and Disney marathons for Tyler's Hope for a Dystonia Cure and has set up a site to accept donations at www.runcarrierun.org

    See August 2nd Marathon event for more details.

    Dr. David Reichwage finished his 22nd Boston Marathon proudly wearing the Tyler’s Hope logo and spreading the word about dystonia. He finished the 26.2 mile race in 3:48:14.

    2009 Poker Run was a big success.

     Tentative date for 2010 is April 24th.

    More details can be found on the event page

    This picture is courtesy of the Gainesville Sun Newspaper

    Link to Rogers Hartmann's site: www.lifewithdystonia.com

    Rogers was on Oprah and The Today Show and has other upcoming shows. Rogers suffers from dystonia and is one of our greatest advocates.