Tyler's Hope for a Dystonia Cure

Tyler's Hope for a Dystonia Cure ("Tyler's Hope") is a non-profit foundation based in Gainesville, Florida that raises money and awareness for Dystonia, a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.

Tyler’s Hope was established in 2005 by Rick and Michelle Staab in response to their son, Tyler’s, diagnosis with DYT1 Dystonia.

About Tyler's Hope

Tyler’s Hope is a member of the Dystonia Coalition, a collaboration of scientists, institutions, and patient organizations formed to advance the pace of clinical research for the dystonias. Tyler’s Hope created the International Dystonia Patient Registry, a voluntary, a patient-reported, international, multi-center, disease or condition-listing registry for patients and their families who carry the DYT1 Dystonia gene. The organization also distributes grants, such as the Edward V. Staab Memorial Grant or the Cure Dystonia Initiative Grant, to promising Dystonia researchers. Tyler’s Hope has funded the writing and publication of a book on integrated management of Dystonia patients, The Dystonia Patient, written by the dystonia team at the University of Florida Movement Disorders Center. Tyler’s Hope hosts an annual think tank summit with the McKnight Brain Institute in Gainesville, Florida. The main project of Tyler’s Hope for a Dystonia Cure is the Tyler’s Hope Center for Comprehensive Dystonia Care, a research and treatment center dedicated to Dystonia and located in the University of Florida Movement Disorders Center. Tyler's Hope is largely staffed and supported by the management and employees of InterMed Biomedical Services, Inc., InterMed Nuclear Medicine Services, Inc. and InterMed Ultrasound Services, Inc., three companies out of Alachua, Florida.

The Tyler’s Hope Story

As a healthy and active 7-year-old boy, Tyler Staab enjoyed playing basketball, soccer, tennis and golf. In February 2005 all of this changed. While practicing his basketball skills one day his father, Rick, noticed that Tyler could not bring his arm in without it shaking uncontrollably.

After months of hospital visits, the Staabs met Dr. Michael Okun of Shands at the University of Florida. He diagnosed Tyler with Primary Generalized Early-Onset Dystonia, a type of Dystonia characterized by twisting muscle contraction that begins in childhood. Symptoms of DYT1 Dystonia are believed to result from altered neuronal communication in the basal ganglia. This was confirmed with a blood test for the DYT1 Dystonia gene. According to the Dystonia Medical Research Foundation, Dystonia is a neurological movement disorder affecting the central nervous system characterized by involuntary and often painful spasms of the muscles. This disorder currently has no cure and progressively robs one of the ability to control voluntary movements and even the ability to walk.

According to the National Institute of Neurological Disorders and Stroke in the National Institutes of Health, Dystonia is a neurological disorder in which “sustained muscle contractions cause twisting and repetitive movements or abnormal postures.” The movements, which are involuntary and sometimes painful, may affect a single muscle; a group of muscles such as those in the arms, legs, or neck; or the entire body. Those with Dystonia usually have normal intelligence and no associated psychiatric disorders.”

Tyler underwent Deep Brain Stimulation (DBS) in June 2006 with the hope of giving him some relief of his painful symptoms and had positive, though not drastic, results. Deep Brain Stimulation is a neurosurgical treatment which stimulates the brain with mild electrical signals, which are emitted from a brain pacemaker.

Since Tyler’s diagnosis in 2005, the Staabs have been focused on raising money and awareness through Tyler’s Hope. In 2008, their second child, Samantha, then 7, was also diagnosed with Dystonia. The Staabs have a third child who has not displayed symptoms of Dystonia. In January and February 2010, Samantha Staab also underwent Deep Brain Stimulation surgery in hopes of alleviating some of her symptoms.

About Dystonia

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. Researchers have identified 15 different genetic mutations that can contribute to Dystonia, including mutations in the DYT1 gene, which causes whole-body or “generalized” Dystonia. DYT1 is diagnosed by molecular genetic testing of the TOR1A gene revealing the three -base pair deletion c.904_906delGAG in most affected individuals. According to Johns Hopkins School of Medicine, Dystonia is not rare and is actually the third most common movement disorder. Georgetown University Hospital notes that Dystonia affects nearly 300,000 people in North America and does not discriminate, but rather affects people of all races, ages and ethnic groups.

See also

• Dystonia
• Torsion dystonia
• Movement disorder
• Torsin A
• Shands at the University of Florida

External links

• Tyler's Hope for a Dystonia Cure
• CNN Video on Tyler's Hope
• WCJB News Story on Tyler's Hope
• InterMed Website
• Dystonia Medical Research Foundation
• Dystonia Coalition
• The Tyler's Hope Center at the University of Florida Movement Disorders Center
• Dystonia International Patient Registry
• Dystonia at the National Institutes of Health
• American Dystonia Foundation Fact Sheet
• National Institute of Neurological Disorders and Stroke