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Tyler's Hope for Dystonia Cure Inc. Tax ID 20-3733312


• Tyler’s Hope for a Dystonia Cure is a non-profit 501 (c) (3) organization committed to funding research to prevent and cure DYT-1 Dystonia while creating awareness of this disorder.

• Tyler’s Hope raises money through events and campaigns in order to fund Dystonia’s best researchers and most promising projects. They also bring researchers together annually for the topic’s only think tank-style summit and are funding a brain research center at Shands Hospital in FL.

• Tyler’s Hope for a Dystonia Cure was founded in 2005 by Rick and Michelle Staab in response to their son, Tyler’s, Dystonia diagnosis. Since Tyler’s diagnosis in 2005, the Staabs’ middle child, Samantha, was also diagnosed with Dystonia.

• Both Tyler and Samantha have undergone painful Deep Brain Stimulation surgery and various other forms of treatment in attempt to alleviate their painful and debilitating symptoms.

• Tyler and Sam are just two of the nearly 500,000 Americans with Dystonia.

• 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.

• Abilities such as cognition, strength and the senses are normal in Dystonia sufferers, though speech can be impaired as a symptom.

• Dystonia is not fatal, but is a chronic disorder with often unpredictable prognoses.

• Dystonia is the third most common movement disorder after Parkinson’s Disease and Tremor.

• Dystonia does not discriminate: it affects people of every race and ethnic group and one-third of Dystonia patients are children.

• Dystonia affects more people than Muscular Dystrophy, Huntington’s Disease and Lou Gehrig’s Disease.

• Recently, huge strides have been made in the war on Dystonia. The gene and protein responsible are now known. These achievements have been made with very little funding, awareness and time. Just imagine what could be achieved with more of all three.