World Congress on Huntington's Disease 2013

This year the bi-annual World Congress on Huntington’s Disease was held  in September in Rio de Janeiro.  This is a very important event in the Huntington’s calendar, when health professionals, patients and relatives meet to share their experience, expertise and knowledge.  The Congress is hosted by a different country each time.  This year was particularly significant as it was 20 years ago that the HD gene was discovered. 

HD International Logo
 

Ann Jones,  Chairperson of Huntington's WA and Board Member Rensie both attended the congress.  Ann made an address at the congress titled: 'A Global Perspective.'  Valuable information learnt and discussed at the congress has been recorded to share with others affected or interested in HD.

Way back in 1994,  Merv had his predictive testing for HD and found he was HD positive.  I didn't get the internet until 1999 when I spent countless hours researching HD online.  One of my favourite websites was HD Lighthouse, a USA website.  I learnt about the benefits of blueberries and Creatine, both used by Merv.  In late 2008 he said he no longer wanted to use either of these.  His health faltered in 2010.  That was when I stopped my research journey.  As I was working full time and later part time I missed out on attending carer support groups and only now I realise their importance to keep me positive and charged.  I am reminded Melanie will now benefit from what I previously researched and more recent research.

While there is still no treatment or cure for this devastating disease there are many dedicated researchers and scientists investigating all possibilities, and the HD community remains optimistic and hopeful of a brighter future.
While its difficult to capture the event for those people unable to attend, on this occasion some of the speakers at this year's Congress were filmed and these vimeos are available on https://vimeo.com/album/2556826



In addition HD Buzz covered the four day Congress converting the research into plain language for the global HD community, and I would encourage you to read these articles.

'Buzzilia' from the Huntington's Disease World Congress: day 1        http://en.hdbuzz.net/138

'Buzzilia' from the Huntington's Disease World Congress: day 2         http://en.hdbuzz.net/139

'Buzzilia' from the Huntington's Disease World Congress: day 3         http://en.hdbuzz.net/140

'Buzzilia' from the Huntington's Disease World Congress: day 4         http://en.hdbuzz.net/141

 

There were two particularly moving Vimeo presentations on the plight of the HD community in South America. These  were a reminder of how fortunate many people living in countries with a good living standard,  appropriate services and medical aid are available.

 https://vimeo.com/album/2556826/video/75992122

 https://vimeo.com/album/2556826/video/75718277