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Lets Find a Cure!

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

This is a spotlight on a Company, Family, individual, or organization who has gone above and beyond in the search for a cure! People like this bring us closer and closer every day! We want to recognize and thank you for all you have done! You bring us all hope!

 

GlobalHR Research

We want to highlight the Rangar Ultra Relay Team for Tyler's Hope!

For those of you who do not know about The Ragnar Relay Race, it is a 200 mile relay race that takes place in different states around the USA.  Traditionally a race consists of 12 runners who alternate runnning "legs" of the race, while the runners waiting for their "leg" follow along in a van until it is there turn to run again. The ULTRA teams consist of only 6 people so each runner will run Double the amount distance of a traditional team. 

In 2015 six supporters of Tyler's Hope including the Founder Rick Staab will run an ULTRA Team in the Florida Keys. They are running this race to do something that one could not normally do for those who cannot.  Not only are they doing this amazing feat to raise awareness of Dystonia but they are also raising money for Tyler's Hope for a Dystonia Cure.  Please take a moment and sponsor this incredible team on crowdrise.  All the money raised will go directly to Tyler Hope and as always that money will go directly to funding cutting edge research to Cure Dystonia!.

Please Use this link to Check out there Crowdrise Team and to give a donation. https://www.crowdrise.com/syncd4o/fundraiser/richardstaab/1/return/success/success

You can also check them out on Facebook and learn more about the runners and follow there journey as they push themselves past their limits!  https://www.facebook.com/pages/Ragnar-Ultra-Relay-Team-for-Tylers-Hope/376116745803397

We wish their team the best of luck and God Speed!!

































































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Dystonia International Patient Registry

Progressive Diary May 20th/2014

By Rick Staab:

The diary was originally written by me to update all of the things that my family deals with in regards to our children's dystonia. Dystonia is a devastating disorder that affects millions of people  in ways that most do not understand. There is and continues to be peripheral damage from this awful disorder.

 I don't want people to think that we sit around and mope about the struggles my kids go through but instead I am sharing the things that most people can either relate to or want to understand when dealing with any disability in the family or understanding the individuals that deal with dystonia every day.

 Last night I had a conversation with Tyler that will shed a small glimmer of light on what he deals with. First he told me how much he misses baseball and his Mustang team. The friendships and camaraderie that he learned and developed with the Mustangs will always be at the top of the list for life lessons. The feelings and support that those kids had is tough for Tyler to get back. This is a very impressive time of his life as a high school teenager and I cannot imagine the desire to capture these relationships and have this support which is very difficult for Tyler not being able to converse easily because of his speech problems.

 The second conversation we had last night was regarding his weight and his feeding tube. Tyler has added some weight and is trying very hard to continue to gain weight. He is currently at 99lbs. His goal is 140lbs. He became somewhat emotional when expressing that he really wants the feeding tube removed. I told him I was not sure that could happen but we would work on it. I hope I did not discourage him because he is working hard.

 Samantha also has had some recent issues because her implant may need to be redone. She visited the doctor yesterday and it was determined she needs to have another surgery but they are trying to wait until after school gets out. If it continues to get worse then she may need to go in for surgery any day. She is not happy about this and didn’t know what to say.

 Here is a recent Facebook post my cousin Dave posted that captures my sentiments about T and Sammy better than I could write it:

 "When I tell people about your kids, it usually includes the following.
Tyler is one of the happiest people I have ever met. Against all odds, Tyler wins. All the time. Other people's kids bitch and moan about small obstacles. Meanwhile, Tyler smiles and climbs mountains.

Samantha. When Sam got up out of that chair and completed the 5K, she sealed her destiny as a champion. Life is not going to beat Samantha, Samantha is going to beat life. And, she is now a beautiful young lady with a million dollar smile and a billion dollar attitude.

Luke. When I was in Colorado with Luke, I told him I had $100 I wanted to donate somewhere I could make a difference. Luke pitched me on Tyler's Hope and closed the deal. Luke is crazy, funny, and full of support for his siblings. Luke is part of the answer as to how we cure Dystonia. He is one of the best ambassadors for the cause."

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