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.
This book is now available on Amazon.com
The Dystonia Patient Book found under Research
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.
The kids have all started back to school. Tyler is in 7th grade, Samantha is in 4th grade, and Luke started kindergarten.
Tyler has his first test tomorrow. He is still doing well in school but will need to spend much more time at homework and learning this year. Tyler's AID has not been showing up and I believe is sickly. This has not helped Tyler and Michelle is working to try and get this issue taken care of. The school recieves money for the Aids and the position has not been properly filled yet. Tyler was invited to study in Australia on some kind of presidential scholarship. It is a great opportunity but poses other risks and obsticales because of the Dystonia. Any easy solution will be to have me go with him.
Samantha has had some emotional issues with all of the pain and dealing with the Dystonia. She sarted seeing a Phsycologist last week and she seems to like it. She is being fitted for an AFO which is a fancy accronim for something that means a brace. The brace will hopefully straighten her foot. She was very excited to walk a short distance last night after having her foot stretched. She was showing off. It really was awesome to see her so excited so my new goal is to get her walking some even if it is short distances. WE hope the brace will help. Samantha's Aid is good.
Luke is Luke. He started kindergarten and has now been moved up to a K-1 split which means he will be learning at a 1st grade level. I have no idea how this is going to work out but they seem to think he can handle it. Luke will have his second football practice today. He is very intense and listens to the coach. I have to remind myself to keep quiet. I will wear my helmet and jerseys on the sideline though. He is easily the smallest kid out there but he makes up for it with his speed. Crazy Luke.
Saint Michelle has been running around with the kids in every direction and works hard on their homework with them. She keeps them motivated.
Some pictures of this years golf tournament are posted under the events/pictures tab.
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.