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.

Luke is Luke and there is nothing new to tell about "Spiderman". He is always willing to do new things and plays hard from 7am until he passes out.