Category: News

Retirees cycle across Canada to raise awareness about Huntington’s disease

Two Canadian retirees have cycled across Canada to raise awareness of Huntington disease. The two friends left from Vancouver on May 14 and cycled all but eight of the 72 days it took to cross the country. They’d be in the saddle by 8:30 most mornings and spend between four and six hours on the road. On…
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John Valentine on adjusting to life with an incurable brain disorder

John Valentine watched his father deteriorate with the illness – but he refuses to let it beat him. Watching his father’s personality change was John Valentine’s first encounter with Huntington’s disease. Mood swings, agitation and irritability were frequent manifestations of the disease which led to his death – and all the while, John knew there…
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Visit to the Care Home Overduin Sunday, September 18th

On Sunday afternoon, September 18, 2016, following the EHDN Plenary Meeting you will have the opportunity to visit Topaz, the largest and very well organized nursing home for HD patients. This year they are celebrating their 50th anniversary. 14:15 : Buses leaving world forum convention centre 14:30 – 18:00 : Visit to the nursing home…
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Promising research from CHDI’s 2016 Conference – subtiteled in many languages!

In this video 'Postcard from Palm Springs 2016', HD family advocate and former NBC reporter Charles Sabine presents highlights from CHDI's 11th Annual Disease Therapeautics Conference, a Forum for Drug Discovery and Development which ran from February 22nd to 25th this year in Palm Springs California. The message is overwhelmingly positive; a 'new age of…
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Caregivers of Huntington’s Patients Voice Frustrations with Doctors and Health System

Over on  Magdalena Kegelby reports that caregivers of  people with Huntington’s disease describe themselves as invisible patients in a healthcare system they are profoundly disappointed with, according to a study in the journal Psychiatra Polska. While the study was done in Poland, similar findings in both the U.S. and U.K. indicate that changes in medical…
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New Approach in Chile

Many Enroll-HD sites are located at academic medical centers—institutions with medical schools and teaching hospitals, and often physically linked to elite universities. But the first study site to open in Chile is quite different. It is located at CETRAM, a unique patient-centered clinic in a working-class neighborhood in Santiago, the country’s biggest city. Since it…
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The Youth Connection – HDYO

Life for a young person in an HD family can be tough. At home, there may be responsibilities such as helping with household chores or being involved in caregiving. Outside the home, there’s the constant feeling of being an outsider. While other teens and young adults focus on studies and fun, youth in HD families…
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enroll hd Beaumont

A FIRST FOR IRELAND – Enroll-HD now underway in Dublin!

Enroll-HD is now up and running in Ireland, the first time the country has joined a large-scale international study of the disease in people. The launch was the combined effort of the Huntington’s Disease Association of Ireland (HDAI) and neuropsychologist Niall Pender, who together put resources in place to launch the study. “There’s a great…
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Q&A with Sarah Tabrizi – Director of the Huntington’s Disease Center at University College London

Sarah Tabrizi is involved in HD at almost every level. She’s professor of clinical neurology at the National Hospital for Neurology and Neurosurgery and director of the Huntington’s Disease Center at University College London and the National Hospital for Neurology and Neurosurgery, Queen Square, which serves more than 800 families. She leads a large and…
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Communities in South America unable to afford medications

In an article that appeared in the Guardian UK last week, Dara Mohammadi discussed how the expensive drugs required to treat Huntington’s disease are far beyond the reach of the poor communities in South America who take part in research studies. Although there are no treatments to change the disease’s course, says Bernhard Landwehrmeyer, a…
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