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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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    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.

    Get ready for the

    2009 Poker Run

    June 27th, 2009