HDBuzz
Encyclopedia
HDBuzz is a non-profit website that supplies news about Huntington's disease
research in plain language.
, London
) and Dr Jeff Carroll
(Western Washington University
). Its stated aim is to supply "the latest news about Huntington's disease research
in plain language, written by scientists who work on HD" .
As well as being accessible at hdbuzz.net, news is syndicated to a number of Huntington's disease community web sites , as well as via social media
routes including Facebook
, Twitter
and email .
HDBuzz articles are published in English and translated by volunteers into nine other languages .
(HDA), Huntington Society of Canada (HSC) and the Huntington's Disease Association of England & Wales .
A policy on neutrality of funding sources precludes HDBuzz from receiving "funding or support from drug companies or anyone else with a vested interest in a particular therapy for HD", while funding organizations "do not receive special access to" or "editorial control over [its] content." .
HDBuzz is a registered charity in the UK .
is a Consulting Publisher to HDBuzz .
Huntington's disease
Huntington's disease, chorea, or disorder , is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia. It typically becomes noticeable in middle age. HD is the most common genetic cause of abnormal involuntary writhing movements called chorea...
research in plain language.
Overview
HDBuzz was launched in January 2011 by Huntington's disease researchers Dr Ed Wild (UCLUCL
UCL may refer to refer to:In education:* University College London, a public research university in London, United Kingdom and a constituent college of the University of London* Université catholique de Louvain, Louvain-la-Neuve and Brussels, Belgium...
, London
London
London is the capital city of :England and the :United Kingdom, the largest metropolitan area in the United Kingdom, and the largest urban zone in the European Union by most measures. Located on the River Thames, London has been a major settlement for two millennia, its history going back to its...
) and Dr Jeff Carroll
Jeff Carroll (scientist)
Jeff Carroll is a prominent scientific researcher in the field of Huntington's disease . As a carrier of the abnormal gene that causes HD, he is also a public advocate for families affected by the disease, and co-founder of the HD research news platform HDBuzz...
(Western Washington University
Western Washington University
Western Washington University is one of six state-funded, four-year universities of higher education in the U.S. state of Washington. It is located in Bellingham and offers bachelor's and master's degrees.-History:...
). Its stated aim is to supply "the latest news about Huntington's disease research
Huntington's disease clinical research
There are different therapies under investigation for Huntington's disease. Huntington's disease is a genetic neurological disorder characterized after onset by uncoordinated, jerky body movements and a decline in some mental abilities for which there is no cure or effective treatments...
in plain language, written by scientists who work on HD" .
As well as being accessible at hdbuzz.net, news is syndicated to a number of Huntington's disease community web sites , as well as via social media
Social media
The term Social Media refers to the use of web-based and mobile technologies to turn communication into an interactive dialogue. Andreas Kaplan and Michael Haenlein define social media as "a group of Internet-based applications that build on the ideological and technological foundations of Web 2.0,...
routes including Facebook
Facebook
Facebook is a social networking service and website launched in February 2004, operated and privately owned by Facebook, Inc. , Facebook has more than 800 million active users. Users must register before using the site, after which they may create a personal profile, add other users as...
Twitter
Twitter is an online social networking and microblogging service that enables its users to send and read text-based posts of up to 140 characters, informally known as "tweets".Twitter was created in March 2006 by Jack Dorsey and launched that July...
and email .
HDBuzz articles are published in English and translated by volunteers into nine other languages .
Support
HDBuzz is financially supported by national and regional Huntington's disease patient and family organizations. Among the eleven supporting organizations are the Huntington's Disease Society of AmericaHuntington's Disease Society of America
Huntington's Disease Society of America is a national non-profit organization committed to finding a cure for Huntington's disease. Huntington's disease is an incurable degenerative disease of the nervous system that affects movement, thinking, and some aspects of personality. The disease is...
(HDA), Huntington Society of Canada (HSC) and the Huntington's Disease Association of England & Wales .
A policy on neutrality of funding sources precludes HDBuzz from receiving "funding or support from drug companies or anyone else with a vested interest in a particular therapy for HD", while funding organizations "do not receive special access to" or "editorial control over [its] content." .
HDBuzz is a registered charity in the UK .
Oversight
An oversight committee of "independent clinicians, scientists and lay community members" scrutinizes HDBuzz content "to ensure ... content is impartial, scientifically accurate and understandable". Emmy award-winning journalist and Huntington's disease advocate Charles SabineCharles Sabine
Charles Sabine , is an Emmy-award winning TV journalist who worked for the US network, NBC News, for 26 years, before becoming a spokesman for patients and families suffering from degenerative brain disease .- Early life and Career :Sabine was educated at Brentwood School, England, then obtained a...
is a Consulting Publisher to HDBuzz .
Recognition
- The HDBuzz project was presented at the 2011 World Congress on Huntington's Disease .
- HDBuzz received the 2011 Award for Scientific Communication by the Huntington's Disease Association of Northern Ireland (HDANI) .
- In November 2011, HDBuzz was the subject of an editorial article in the scientific journal Trends in Molecular Medicine, published by Cell PressCell PressCell Press, an imprint of Elsevier, publishes biomedical journals, including Cell, Neuron, Immunity, Molecular Cell, Developmental Cell, Cancer Cell, Current Biology, Structure, Chemistry & Biology, Cell Metabolism, American Journal of Human Genetics, and new titles – Cell Host & Microbe and Cell...
.