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Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.

From Kitchen to Cure!

Spotlight of Hope

Thank you to our Tyler's Hope 10 for 10 Participants
  • Governor Jeb Bush
  • Rick and Michelle Staab
  • InterMed
  • Scarborough Insurance
  • Front Street Commercial Real Estate Group
  • UF Health
  • Florida Farm Bureau
  • MD Publishing
  • A+ Medical
  • WaffleHouse
  • Endoscopy Replacement Parts, LLC
  • SunTrust
  • Scherer Construction
  • Koss - Olinger Financial Group
  • Crime Prevention Security Systems and Custom Home Entertainment.
  • Advantage Publishing 
  • Dr Brian Poplin
  • Brian and Amber Crawford
  • FIGG 
Dystonia International Patient Registry

Progressive Diary July 13th, 2016

By Rick Staab

Upcoming Surgery for Tyler

It has been a while since my last update and thank you to all of the people that have reminded me to do so lately. The Secret Pal has been consistent and the love and encouragement they get from the Pal cannot be measured.

Tyler is 18 and graduated from St Francis High School. He has really been struggling physically lately because his batteries are dying. He takes a small amount of medication now when he is really hurting and his surgery to replace the batteries is this Friday. He has started working doing data entry with InterMed Group but this week he took off work to spend time with a great group of his friends from Tennessee. These boys all met on line playing video games originally. They drove down to spend five or six days together and met in person for the first time. They have gone to the beach, lake, springs, and done a bunch of cool things together. It amazes me how understanding and helpful these kids are with Tyler. The first day, I saw Yaeger carrying Tyler down to the lake in his arms. These are great kids and show us what we should and can do. Often times that is not what we see when people deal with disabilities they don't understand.

Samantha is a rock star all of the time and remains smart and sweet but she is 15yrs old and I don't understand some of the clothes. I guess I'm just like every other Dad except I am not as understanding around teenage boys. Samantha has been playing volleyball and had the opportunity a few weeks ago to go compete in the Nationals in Indianapolis. She and saint Michelle had a good time. Samantha will also need battery surgery soon.

We don't see Luke much lately. Luke is 11 and still playing lots of lacrosse. He is not showing any signs of dystonia at this point. Luke has been at summer camp for the last two weeks.

August 4-6th is The Hope Weekend and it is shaping up to be the best fundraiser to date. We are hopeful of announcing some new partnership in our fight for a cure and we will be providing information from the researchers and clinicians at the Friday dinner/auction.

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