Orange County Chapter
JUVENILE HUNTINGTON'S DISEASE
Fewer than ten percent of individuals with HD develop symptoms before age 20. Because it is uncommon and differs from typical adult-onset HD, in both the neurological symptoms and the ways that it changes the lives of the individuals and families that it affects, juvenile onset HD presents unique challenges to affected individuals, their caregivers, and the various professionals who are called upon to assist them.
Typical initial symptoms of juvenile HD:
• Positive family history of HD, usually in the father
• Stiffness of the legs
• Clumsiness of arms and legs
• Decline in cognitive function
• Changes in behavior
• Changes in oral motor function
• Chorea in an adolescent
• Behavioral disturbances
It is suggested that you contact your closest HDSA Center of Excellence if you have reason to suspect a case of juvenile onset Huntington's Disease.
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International Youth Organization -- HDYO --
To Launch New Website
HDSA is pleased to announce that an international collaboration of young adults, organized as "HDYO" (HD Youth Organization) will be launching its website and first set of material at midnight tonight. HDSA is one of the major supporters of HDYO, and we are excited to add this up and coming resource to library of materials available through the HDSA website.
"HDYO is a great collaborative effort of young people affected by HD," said Louise Vetter, HDSA CEO. "We were pleased to host a meeting of the HDYO founders and representatives from 12 countries at last year's Convention. The NYA was the first youth organization for members of the HD community, and HDYO will provide more resources for our young adults -- and give our NYA members the chance to share what they've learned with peers around the world."
Please see the HDYO Introductory Letter below:
Launch of the Huntington’s Disease Youth Organization’s Website Celebrated Around the World
First organization to focus on providing much needed support to young people affected by the devastating hereditary disease.
February 6, 2012 – The Huntington’s Disease Youth Organizations (HDYO) is pleased to announce the launch of www.HDYO.org, the organization developed specifically to support young people affected by Huntington’s disease (HD), a devastating degenerative brain disorder that affects an individual’s ability to walk, talk and reason. Children have a 50 percent chance of inheriting the fatal gene if their parent has the disease.
The website began as a dream of one and a need by many. Matt Ellison, a 23-year-old from England, was the visionary to bring the HDYO website to life. As a young person witnessing his Dad’s progression of HD, he knows firsthand of the difficulty that surrounds a young person impacted by HD.
“The impact of HD on your life can be huge, and yet the support available to young people is miniscule,” said Ellison, Founder of HDYO. “I felt this lack of support and resources was unacceptable and that something needed to be done. Young people deserve to be recognized and provided appropriate support.” said Ellison.
With help from other young people affected by HD around the world, Ellison and the team have made great strides towards improving the much needed support with the launch of the HDYO website. The site contains educational information created specifically for young people, by young people. The material includes articles, illustrations, videos, audio and personal stories. The goal of HDYO is to empower youth with knowledge about HD and provide a supportive community to help each other cope with realities of the disease.
“The website is truly a remarkable effort of Matt and many other young people who are dedicated to a cause,” said BJ Viau, HDYO’s U.S. Board Member. “Now the challenge is spreading the word and helping others realize we are here to support them.”
In order to support young people worldwide, HDYO’s material is currently being translated into a dozen different languages by a team of more than 20 translators – many of whom are young people from around the globe who want to help other young people in their region gain more access to information about HD.
About Huntington’s Disease: HD is a devastating, hereditary, degenerative brain disorder for which there is, at present, no cure and limited treatment options. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's disease profoundly affects the lives of entire families -- emotionally, socially and economically.
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HDYO Board of Directors Contact Information
Matt Ellison (England): firstname.lastname@example.org
BJ Viau (USA): BJ@hdyo.org
Brynne Stainsby (Canada) Brynne@hdyo.org
Michelle O’Brien (Australia) email@example.com
Catherine Martin (Scottland) Catherine@hdyo.org
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