Progressive Diary 1/21/2014
By Rick Staab:
Jacob and I recently went to the University of Michigan to follow up on the research that Dr. Bill Dauer and his team are doing. We funded a project that has some very positive results and also eliminated/ closed some doors on others. We have many new avenues to pursue in our partnership with Michigan and their team.
The Dystonia Summit is on January 31st and I get excited about the interaction that takes place at these think tanks. The recent award winning mentor to many researchers in the dystonia field, Mahlon Delong will join us again along with many other presenters. I like getting face time with these great people to tell them they are not doing enough yet and work harder. Really. I am very appreciative of what they are doing and able to do but it is a new perspective for a lot of them that do not get to interact with the patients. I introduce them briefly to Tyler and Samantha and they get it. I have et a few people that do great research but had never met a person with dystonia.
Tyler is doing well and works hard. Our new thing right now with Tyler is setting some gaols he wants to accomplish this year so that Ican try and helphim with them. Goals for Tyler may be finding a job he can perform and get paid to do. School grades and family time are some I will push on him. By setting these goals it will allow me to find something I can do with him also. It is difficult for me now because he either does something with his buddies Dillon and Zach or plays video games which they all do together. I want to find something outside of video games(I suck at them).
Samantha isa superstar and is driven like no other. Her grades are great and she works hard at school. She continues to play volleyball every day of the week and travels with a new team as well. She would be one of the best players if she had more mbility and more balance. Dystonia sucks!
Luke is a nut still and plays every sport he can. Right now he is playing on a city league basketball team. He is easily the smallest person right now because he barely made the cutoff date to play in this league but he is doing well. He started back with his Lacrosse team last week and has really improved. Coach said " Staab is going to be a scoring beast" and dont let Staab get by you or you will never catch him. He is good at Lacrosse now. Michelleand I worry about the possibility of Luke showing dystonia symptoms every day but so far so good.