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 […]
Study reveals how oxidative stress causes damage in incurable Huntington’s disease
In a new study, Johns Hopkins Medicine researchers identified the mechanism through which oxidative stress specifically damages nerve cells in Huntington’s disease. Human cells regulate oxidative stress in many ways, but the process involving amino cysteine may play a key role. Because cysteine deficiency and oxidative stress have been linked to other diseases, such as […]
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 […]
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 […]
Congress on care in Huntington’s disease: The need for evidence – 15 September 2016, Leiden, The Netherlands
The Congress “On care in Huntington’s disease: the need for evidence” for care professionals, focuses on recent (evidence-based) developments in the field of care for people with Huntington’s disease. During this interactive congress, outcomes of research, acquired in the field of Huntington’s disease, will be exchanged, in order to allow us to come to the […]
EHDN 2016 at The Hague & EHA Business Meeting for all Members – September 15th – 18th
European Huntington’s Disease Network (EHDN) – Plenary Meeting, September 16-18, 2016, The Hague, The Netherlands Join us via: http://www.euro-hd.net/html/ehdn2016/registration Deadline for registration July 31 Click here to view the programme for the conference EHA Business Meeting for all Members will also take place at The Hague on the 15th of September. Please sign-up for […]
Promising research from CHDI’s 2016 Conference – subtiteled in many languages!
[vc_row][vc_column][vc_column_text]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 […]
Electron beam snaps best images yet of Huntington’s disease protein
Electrons enable huntingtin protein, the cause of Huntington’s disease, to be visualised at highest resolution ever Figuring out the shape of a protein can help scientists understand how it works and what goes wrong in disease. Huntingtin, the protein that causes Huntington’s disease, has been an elusive target. A recent study using electron microscopes offers […]
Study Finds Prenatal Testing for Huntington’s Should Include Psychological Support
Magdalena Kegel reports on huntingtonsdiseasenews.com that new research from University Hospital Pitié-Salpêtrière at Sorbonne University, France indicates that couples at risk of transmitting Huntington’s disease to their children need more psychological support before pre-natal testing of the embryo’s genetic status, and additional counseling should they choose to reproduce again. In practice, about 5-25% of men and women at risk for […]
Caregivers of Huntington’s Patients Voice Frustrations with Doctors and Health System
Over on huntingtonsdiseasenews.com 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 […]