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.

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The 5th annual Tyler’s Hope golf tournament concluded Saturday. Our goal heading into this weekend was to eclipse the $1 million dollar mark for funds raised during the golf tournaments. I am happy to say that we achieved our goal and seem to continue to make progress and generate more support each year.  Several of the new sponsors are going to help in other ways and have promised to do much more. We will cure Dystonia and it will be because of everyone’s genuine support for Tyler’s Hope and desire to help with this devastating disorder. Companies are also supporting our cause by raising awareness through adding the Tyler’s Hope website to their web pages and also email signatures as proud supporters.

The doctors (Foote, Okun, and Rodriguez) brought everyone up to date with the research and progress we have seen from the projects we have funded already. Once again, all of these dollars go towards research for a cure and none of it goes to Tyler or Samantha. We have discovered some potential drug treatments...

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I am getting excited about the golf tournament kick off in 11 days. We are completely sold out again and have a waiting list. This shows the support and encouragement that people give when they here about dystonia and ours plans to cure it.Tyler has been doing his summer reading and going to movies with his friends. He swims and went to a party last night for a close friend who is moving to Orlando. His left arm pulls upwards and his jaw has been making it very difficult to eat. We started buying Boost shakes to have in between his high calorie ensure shakes.Samantha has had some fun lately because some friends have come over to play with her and yesterday she went to a friends house and swam. They had a good time. She likes giving people funny make overs but it is very difficult for her because she cannot keep her hands steady. Her back is still twisting and pulling and her feet are still turned in. She has an awesome new haircut that looks great and I think it makes her confident. Luke is doing great and decided...

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Please note the new pictures under the event pictures. We will be updating these for each of the events.The following is a letter I received today that I thought I should share. Dear Mr. Staab, You don't know me, but I have spent a good portion of this evening reading the updates on your precious family through the "Tyler's Hope" website and trying to find a way to contact you all and let you know what a huge inspiration you are to so many of us. My family decided to eat at Outback Steakhouse last night here in Gainesville, and upon entering, we were directed to a table in the back. As I walked toward the back of the restaurant with my son, I met eyes with a gorgeous girl who took one look at us and immediately smiled. So many times at first glance, we are not met with smiles...but with awkward furrows and looks of sadness. But this girl, she smiled as soon as she saw us...it was a smile of understanding. A smile of "I know what you are going through. I then noticed that she was in a wheelchair and realized that...

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We all got to spend some time this past week with a couple of families that drove down to Florida for the week from New York to have their children receive Deep Brain Stimulation surgery from DR. Kelly Foote and Dr. Michael Okun. These kids have had multiple surgeries and are hoping that the doctors here at UF/Shands are able to help them. Tyler, Samantha, and Luke played with them and their syblings while the night before surgery started and then we all went to be with them as they waited for the surgeries to be over. It waas another great family that we feel close to now and has dealt with tramendous difficulties. I hope and pray that their children get relief and I am determinde to motivate the researchers to find a cure. Tyler and Luke decided they were getting Mohawks this week. They did get them and I did not recognize them when I got home. I am praying their hair will grow out before the golf tournament in a few weeks. (The Tyler's Hope Golf Tournament is sold out again and the waiting list is growing)....

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The 5th annual Tyler's Hope golf tournament is coming up soon and we are sold out again. I am starting to get excited as I talk with people that are also excited about this year’s event and how to make it special. A number of corporate sponsors have stepped up and we will raise a lot of money to fund research at a critical time. The kids:Tyler has been very busy after returning from Cooperstown NY with his baseball team. He started computer camp this week and ends today with a visit to Disney to check out their animation. It is definitely ok to think of yourself as a jock and a geek. Tyler had some pulling in the left side of his face last week. Although it was a new symptom and scary, I believe it was induced by the fatigue from Cooperstown. He seems to be doing much better. We are trying to give him extra shakes and nutrition since he was not able to take shakes in Cooperstown.Samantha has been having pain and difficulty. She often has trouble getting to sleep at night which makes her symptoms worse. It becomes...

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The secret pal struck again this morning. The Pal left three books for the kids and a note encouraging them to read during the summer.

I have been traveling a lot lately while Saint Michelle provided family duties so I notice subtle differences in symptoms with the kids more. Tyler has been practicing baseball and very excited about the Cooperstown trip we are taking next week. Yes, Michelle, Tyler and Myself will be out of town but if you plan to rob my house at that time I would not advice it. "Guido" will be staying at the house with the kids and there is always our two trained dogs to contend with. Tyler has made some real strides in his ability to be involved and play baseball. Last week at practice his coach was hitting fly balls to him in left field and Tyler was catching them. Several people called and said how cool they thought that experience was and how other kids have grown from this experience. Kyle McGriff and other friends of Tyler’s were giving him high fives and encouragement. Cooperstown...

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I have been spending some time with my Mother who is suffering from Alzheimers. Every day I want to spend more time with my kids and family. My friends and family are so much more important to me since we have started our battle against dystonia. They have been very important and inspiring to us.

Tyler went with a group of friends to the movies. He said he won a special girl some stuffed animals but she beat him in a race game.

Samantha won the Tyler Staab award for 3rd graders. She was completely suprised and very happy. She has shown excellent character and gets straight As. WE are very proud of her.

Luke found some Batman boxers and thinks he is the Big Dog around the house now. He had his last day of school on Friday and is ready for summer.

We are nearing the end of the school year for the kids. Luke, aka Spiderman gets out this Friday. All three kids seem to being doing very well again and scored very well on their recent FCATs.

Samantha keeps telling me about the annual Tyler Staab award that her school will be giving out this Friday because she is a finalist. Both Samantha and Tyler lose their aides for next year. Tyler's Aid is moving and Samantha's Aid is becoming a teacher. This is scary going into a new year without knowing the Aid. Tyler's Aid is out on vacation the next two weeks so he doesn't have anyone to assist him while preparing for his finals next week.

Tyler went tubing with a couple friends last weekend and had a blast but he worked really hard to stay on the tube because he can only grip with one hand. Any person would have been completely worn out from a day of tubing but he was having so much fun he kept wanting to do more. I find it hard to tell him to stop even though he probably should because he is eating up...

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I was very encouraged after an excellent Tyler's Hope Summit. The discussions were lively and I have heard from several researchers that they got energized from the meeting and went back with new ideas and enthusiasm about finding treatments and eventually a cure.

Tyler has been doing well this week after a difficult week with his dystonia last week. He went for a programming last Thursday and found that he was turned up to high causing some of the symptoms to be worse. When he was turned off his left arm relaxed some so they turned his programming down and it seems to have improved some. Tyler's left arm constantly pulls upwards now and stays above his head. Tyler is doing well in school again and won the student of the week award. He has his Junior National honor society party coming up and is excited about that. I wish I was the smart growing up. Tyler continues to struggle every day with his weight.

Samantha is also doing well and has made it very obvious o us that she wants to win the Tyler Staab award at school. Michelle said it is probably down to two people and Samantha is one of them. The teacher that started this award is coming up from south florida to give it again this year. Samantha seems to be starting to get some benefits from the DBS surgery. She is definitely more mobile now although not out of her wheelchair or walking yet. It would be hard for the general public to tell how she has benefited yet but it is easy for us to tell in her daily activity.

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