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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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March 6th, 2010

Samantha continues to have some pain but continues to have less pain from her surgery every day. She went to her fisrt Deep Brain surgery programming on Thursday but we have not seen improvements yet. It is still early so we are not concerned with not seeing anything yet.

Tyler was checked last week for his programming and they found that he will need to replace his battery pack on his left side very soon. We are scheduling for it to be taken out and replaced the end of next month.

Samantha has a hard time sleeping at night. It is hard for her to lay flat on her back because it irritates her staples in her head and turning on her side is very difficult. She has adjusted some and is sleeping a little better but for several nights we have been up all night with Samantha.

Luke has woken up on several occasions and complained about his legs hurting. It is always when he is tired and I am not sure if they are sympathy pains beause he hears his syblings or growing pains or worste of all posibly the first signs of dystonia. Right now I think I am looking too much into it because he doesn't have any problems going 100 mph evrywhere he goes and I see no coordination problems. I wish I had his energy and coordination and Tyler and Samanthas brains.


More about Dystonia
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American Idol, Anoop Desai with Jordan Staab in his Tyler's Hope shirt. Each of the Idol contestants received a Tyler's Hope shirt.

2009 American Idols showing their support with their Tyler's Hope for a Dystonia Cure shirts

 

 

 

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.

Carrie Sui Butt (Center) Ran and finished the Chicago Marathon raising money for Tyler's Hope and research for Dystonia. Carrie suffers from dystonia and was able to finish the race with help from her friends, determination, and will power.