The following speach is what I read at the Press Conference following the announcement of the research laboratory funded by Tyler's Hope 1 million dollar donation:

 Thank you Dr. Good and Dr. Okun for your efforts today, and for all that you have done to get us here. 

A little over five years ago, our lives changed in a way that most parents would describe as a nightmare.  After a lengthy search, we were told that our oldest son had a disease that very few people knew about, that had no known cure, and for which treatments were in the research stage at best.  We went from talking about baseball gloves, basketball and X-box to learning about spinal taps, EMGs, and Deep Brain Stimulation.  In our travels we discovered that very few people, including many physicians, actually knew what dystonia was.  [My brother was certain that it was a breakaway Russian republic.]

We had two choices – get run over by the grief and “unfairness” of the diagnosis, or do something about it.  Michelle and I were both raised by great parents that taught us to fight bullies, and Dystonia is indeed an arrogant, selfish bully at best.  We reassessed our priorities, formed Tyler’s Hope at our kitchen table, and reached out to our family and friends.  

As we built the idea of Tyler’s Hope, we received support from partners that either helped us build bridges or move rocks out of the road.  Together, we turned anger into energy, heartbreak into action, and passion into a measured purpose with a single goal of finding a cure.

Fighting a battle like this makes you redefine your heroes.

Dennis Steindler was our keystone in the beginning, as his advice on forming the foundation, setting ultimate goals, and navigating through the challenges has proven to be nothing short of Yoda-level insight.

Hero.     Thank you Dennis.

Because of my children’s illness, I have had the honor of meeting the amazing Doctors at UF, particularly Dr.’s Okun and Foote.  I have no words for my admiration and respect for these Doctors and their teams, and can never properly repay them for their passion, determination, and steady perseverance.

Heroes.     Thank you Kelly and Michael. 

We are truly blessed to have a “Warrior Class” Board of Directors backed by an army of family and friends that sustains our energy, our passion, and our focus.  The city of Gainesville and its amazing embracing of the Tyler’s Hope vision have blown us away.  Every hint of progress, every small step forward ignites the Tyler’s Hope Army like gas on a fire.  Having Dr. Lee join the team was like jet fuel, and has raised our visibility and hopes for additional progress.

Heroes.  All heroes.

My wife Michelle, who personifies grace and dignity, despite dealing daily with the hardest thing a parent can face – her children in pain.  Her ferocity for Tyler’s Hope is matched only by her support and her tolerance for me.

Hero.   I love you Michelle.

Part of our mission statement reads: We are inspired by the fearless energy, courage, and love of life exemplified daily by our namesake and his sister. 

Tyler and Sammy – heroes.

The most amazing thing about Tyler’s Hope is that the original intensity has not faltered.  We are making real, measured progress, and your contributions are helping. Our announcement today is proof of that.  Keep spreading the word, attending the events, wearing the shooting star, and helping us increase the bottom line donations and we will finish this fight. 

We have raised the bar each year since our inception.  We expect to do the same in 2011 by adding events and new chapters and expanding our army.  In 2010 we also established the Edward V. Staab Memorial Grants and announced the recipients of the first three awards.  We have secured the financial resources to ensure that these grants continue for many years to come.

Today’s events and our partnership with The University of Florida are our most heartfelt achievements to date.  We mark this day as both an emotional highlight and the end of our first chapter. We are charging into the next phase and make this pledge: 

We will be relentless, fearless, and tireless in our efforts to fund this research and find a cure.  Dystonia, your days are numbered.

Thank you Dr. Good, Dr. Okun. Dr. Foote, Dennis Steindler, and all of the Tyler’s Hope warriors.