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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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May 11th, 2012

Tyler recently had several doctors appointments and is taking an agressive approach to trying to get his left arm and wrist down. The fear is that it is locked and may take surgery to get it straight again. Tyler got a lot of botox in his wrist and some in his arm. Today Tyler woke up and was excited about how relaxed his hand was. He tried to straighten it all the way and feels like he may have hurt it. He got a little too excited but it is good to see. Tyler will have serial casting in two weeks for that wrist. They believe that his arm raises above his head as overflow from his wrist issues and is action induced.

Samantha still works hard in physical therapy and went to Epcot with St. Michelle on a school field trip yesterday. Samantha works hard to try and learn volleyball. Samantha is very helpful around the house. She goes to all of Luke's baseball games and supports her little brother. She just finished her Math placement tests and will be going into 6th grade next year.

Luke is doing well and is not showing signs of Dystinia now. He is playing baseball and just got finished reading to me from Tim Tebow's book.

Happy Mother's Day to all of the Moms.


More about Dystonia
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The Dystonia Coalition is a collaboration of scientists, institutions, patient advocacy organizations and the National Institutes of Health – all united to advance clinical research for dystonia. Tyler's Hope for a Dystonia Cure is proud to be a working partner of the Coalition. More information can be found under the Research Tab.

 

 

 

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