Tyler's Hope for a Dystonia Cure
- Tyler's Hope for a Dystonia Cure
By Rick Staab, Co-Founder and President, Tyler's Hope for a Dystonia Cure
Special to The Movement Disorder Society
It started in early February 2005, at basketball practice. Tyler Staab, our then seven year-old son, was struggling with his normally smooth jump shot. His arm was bent at an unnatural angle, and I knew something was very wrong. After cross-country visits to some of the best medical facilities in the country, Tyler was diagnosed in June 2005 with generalized DYT1 Dystonia.
Our devastation was compounded by the frustration with the almost total lack of literature on the subject. It was clear that most people in this country had never heard of dystonia, and that many other children may be suffering and misdiagnosed at the same time. Our family's commitment to battle the disease became the genesis of Tyler's Hope for a Dystonia Cure (501C3). Born in 2006, Tyler's Hope was created to bring together the world's best doctors and researchers to find a cure for DYT1 dystonia.
Backed by a passionate surge of support from family, friends, local businesses and national peer organizations, the foundation has been able to fund and create one of the top Dystonia programs in the country. Guided by a diverse and passionate Board of Directors, Tyler's Hope has now expanded into multiple chapters with contact throughout the country and internationally with support groups and peer foundations.
In a "Manhattan Project" approach to addressing dystonia symptoms and ultimately identifying a cure, Tyler's Hope brings together the top researchers in the field each March for The Summit on Dystonia Research. This 2-day think tank provides an unencumbered, egoless environment for the researchers to combine their thoughts. In honor of one of its founding members, Tyler's Hope has named the Edward V. Staab MD Memorial Grant, given annually to the top research project identified by The Summit.
Specific research has also been funded by the foundation at the Universities of Iowa, Columbia, Harvard and Florida. The first two years' fund-raising success has been channeled into action with the establishment of the Tyler's Hope's first Center for Comprehensive Dystonia Care at The Movement Disorders Center at the University of Florida. Staffed by a full-time Program Coordinator, the Center supports the fund-raising, education, communications (website and newsletters) and research coordination efforts of the foundation. This will hopefully be the start of many more Centers for Comprehensive Care throughout the world!
Tyler's Hope continues to work with the DMRF and other foundations to help raise money for needed research and as an advocate for awareness and care. The foundation has funded top programmers and registry experts to make comprehensive registry of DYT1 and other Dystonia patients, supported by the DMRF and other groups, and open to all the universities and companies that could potentially use this information to improve quality of life and find a cure. It has been translated into many languages and our hope is that it will encompass all of the countries of the world.
In June 2008, we received genetic confirmation that our second child, Samantha, also has DYT1 dystonia.
About Rick Staab
Richard A. "Rick" Staab is the President and CEO of InterMed Biomedical, Nuclear, and Ultrasound Services, Inc. He is the 2008 President of the Gainesville Jaycees and 2009 Chairman, on the Advisory Board for Santa Fe College (state biomedical program), a member and advisor for C.E.O. (Council for Economic Outreach), member of Alachua County Emerging Leaders, and Rotary. Rick has a bachelor's degree from Hampden-Sydney College in Virginia, and has been published in The Medical Dealer and Ask the Expert. Rick and his wife Michelle are the founders of Tyler's Hope for a Dystonia Cure (501C-3), and he serves as its President. They have three children: Tyler (11), Samantha (7) and Luke (4). They live in Gainesville, Florida.