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...

Read More »

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)....

Read More »

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...

Read More »