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Progressional Diary

May 25th, 2010 - Progress

by Anonymous on Monday, May 24, 2010 10:00 PM
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.

...

May 10th, 2010

by Anonymous on Sunday, May 09, 2010 10:00 PM
Today is a big day at Brentwood school (Luke's school) for Tyler's Hope. The kids will all be doing activities that will help them understand living with dystonia and other handicaps. They will do some things like wearing boxing gloves to draw a picture, take wheelchairs through obstacle courses, and do a balance beam with oversized shoes. Luke is really excited because he feels like good about doing something for Tyler's Hope. Samantha gave him $5 she had for the event.

The Principals awards are going to be given in June. The Tyler Staab Award at Williams is going to be given out again. Samantha has worked really hard to try and win it. It is difficult to give it to Samantha because everyone will think she won it because of her brother. There are some really good kids in the running for the award. They all have great grades and shown enthusiasm and compassion.

In the baseball tournament this weekend, Tyler won two Sportsmanship awards(medals). One of the opposing team coaches wrote a nice letter...

May 6th, 2010- Kids involved in event

by Anonymous on Wednesday, May 05, 2010 10:00 PM
I met with a small group of people that represent different foundations in Gainesville Florida this morning for breakfast. The foundations (Tyler's Hope being one of them) have formed a coalition to work with the University of Florida and Shands Hospital to promote and enhance the health care services for children in our community. Our first venture as a group was to work with Tim Goldfarb and others to get a dedicated area of the new ER for Children. This was very successful and we are now talking with them about creating a dedicated ER for just children at Shands. It amazes me to see how well this community sticks together and how involved people are in making our community better. I have never seen a community that does a better job at supporting and enhancing themselves. Tyler's Hope continues to benefit from the way this community has rallied behind our foundation to support our efforts to find a cure. Unfortunately my meeting with the coalition and with the University of Florida foundation later in the morning...