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 […]
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 […]
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 […]
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 […]
Huntington’s Disease Public Awareness Day 2016
Huntington’s Disease Public Awareness Day Saturday, May 28TH As part of the Together Under the Umbrella awareness campaign for brain disorders, EFNA will organise an information day on Huntington’s Disease. The event is open to those living with Huntington’s disease, their families and friends, carers, health professionals or those with an interest in learning more. […]
#LightItUp4HD for the HD Community
On May 4, 2015, Jamie Walters – a volunteer from the Huntington Society of Canada (HSC) – was instrumental in lighting up the CN Tower to raise the visibility of Juvenile HD (in purple) and HD (in blue) and Huntington disease awareness month, held each May. When the sun set on May 4th, hundreds of […]
How NOT to write a news article about a clinical trial
A confusing story about a huntingtin lowering trial is published in the Telegraph, but cool new stuff is happening! A recent article in the UK newspaper the Daily Telegraph has HD families very excited. The title, “First drug to reverse Huntington’s disease begins human trials”, certainly sounds exciting! But what’s really going on? HDBuzz is […]
1 in 3 Europeans fit under the umbrella – do you?
‘Together Under the Umbrella’ is an innovative campaign which will launch during Brain Awareness Week, March 2016. A year-long initiative of the European Federation of Neurological Associations [EFNA], the campaign will be supported by the European Huntington Association and we encourage you to get involved too! How do I get involved? ORGANISATIONS should visit the […]
Through a Broader Lens: Looking at Non-Motor Symptoms in HD
Common depictions of HD emphasizing only its movement symptoms paint an incomplete picture of the real disease. HD causes both motor and non-motor symptoms that, together, affect the entire body. Now, scientists are using a broader lens to explore this full set of HD symptoms and determine how symptoms might be related in the disease. […]
Give a Toss for Huntington’s Disease
This video is an awareness campaign highlighting the impact that the toss of a “genetic coin” has had on three recent generations of one family. It is thought that there are up to 12,000 other HD families in the UK.