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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

ULTRA RAGNAR RELAY TEAM

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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Progressive Diary September 11th, 2014

By Rick Staab:

It would not be right if I did not mention the tragedy of 9-11 on this day. I will say prayers for those tragically lost on 9-11.

The kids are doing well and each have their challenges that are different from one another. It is aggravating that we have not found a cure yet but we are determined to make this happen. The kids (and adults) that deal with dystonia every day need people to fight for the cure until we find it. They deal with disabilities and pain that you cannot imagine unless you see it every day and unfortunately even then we don't understand everything they deal with.

My kids are strong individuals and I feel they are stronger than most others but it is a shame that they have to constantly battle a disorder that robs them of their abilities that they used to have. They have this mutant protein that evidently does more function/corruption than the non-mutant form they produce. They want the same things that every kid wants in being attractive, physical, popular, and self-sustaining(independent).

Tyler is re-motivated this year in school and although it is early he has all As. I told him I would pay the remaining amount he owes for his truck if he got straight As. I probably should not have bet him but it will be worth it. Tyler has done some very nice things with videos for the family and for promoting Facebook posts.

Samantha plays volleyball all of the time. I think she plays every day of the week and loves it but is continuously frustrated with her lack of mobility. She continues to make excellent grades and I enjoy helping her with her Spanish this year.

Luke is now going to a new school and is challenged academically a little more but receiving some guidance with his dyslexia. He works hard and enjoys everything he does both athletically and in school. He is pretty fun to be around when we see him. He continues to show no signs of dystonia.

PLEASE REMEMBER THAT SEPTEMBER IS DYSTONIA AWARENESS MONTH AND ORANGE IS THE COLOR FOR DYSTONIA AWARENESS

Photo Contest

Tyler's hope photo contest

Tyler’s hope is asking supporters to show us how and where you have spread awareness! - Read more about the photo contest

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