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Originally starting his quest locally in Seattle, Washington, on January10, 2007, Mr. Stevenson set out for his walk across the country in May 2008,and will begin the final leg of his walk on the New Jersey side of the GeorgeWashington Bridge on Monday at 10 a.m., joined by members of HDSA's New JerseyChapter. When Mr. Stevenson reaches the New York side of the bridge, he willbe met by members of the New York Chapter of HDSA, including severalindividuals who have Huntington's Disease.
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The group will proceed to walk downtown to the Terence Cardinal CookeHealth Care Center (TCCHCC), located at 1249 Fifth Avenue, New York, N.Y.,which is the largest skilled nursing facility for people living with HD in thecountry. There will be a reception at the TCCHCC Roof Terrace beginning at12:30 p.m. Mr. Stevenson and his fellow walkers will arrive at 1 p.m., andwill be greeted by individuals and families affected by HD as well as membersof HDSA and the TCCHCC medical and administrative staff. Barbara Boyle,National Executive Director/CEO of HDSA, will present a plaque of appreciationto Mr. Stevenson.
Huntington's Disease is a devastating, hereditary, degenerative braindisorder for which there is, at present, no effective treatment or cure. HDslowly diminishes the affected individual's ability to walk, think, talk andreason. Eventually, the person with HD becomes totally dependent upon othersfor his or her care. Huntington's Disease profoundly affects the lives ofentire families -- emotionally, socially and economically.
HD typically begins in mid-life, between the ages of 30 and 50, thoughonset may occur as early as the age of two. Children who develop the juvenileform of the disease rarely live to adulthood. HD affects males and femalesequally and crosses all ethnic and racial boundaries. Each child of a personwith HD has a 50/50 chance of inheriting the fatal gene. Everyone who carriesthe gene will develop the disease. HD affects as many people as Hemophilia,Cystic Fibrosis or muscular dystrophy.
The Terence Cardinal Cooke Health Care Center is currently home to 52 HDresidents, who receive specialized care and recreational programming -- TaiChi, Massage, Music Therapy, Horticulture -- to promote safety, independenceand well-being. This year marks the 20-year anniversary of Cardinal Cooke'sopening of the unit and the admission of the first HD patients to TCCHCC. Theprogram of care at TCCHCC is considered a model for Huntington's Diseaselong-term care facilities throughout the United States. TCCHCC MedicalDirector, Dr. Anthony Lechich, spearheads an education program for medicalstudents held at TCCHCC, encourages research and writes articles regarding HD.TCCHCC is honored to be part of this celebration, thankful for Mr. Stevenson'sefforts, and hopeful that his accomplishment will bring more focus on HD andthe importance of funding HD research and treatment.
The Huntington's Disease Society of America is comprised of 38 localchapters and affiliates throughout the United States, with its nationalheadquarters in New York. HDSA raises funds for its unique HDSA Drug ResearchPipeline, made up of the HDSA Coalition for the Cure (basic scientists), CHDI(a virtual translational drug company), which develops potential therapies,and a clinical trials group that promotes and administers clinical trials ofpromising therapies. HDSA also supports 2
