Dear Friends
I’m writing to you from Melbourne where I have just attended the World Congress on Huntington’s Disease. I last attended a WCHD back in 2005 and while travelling to Melbourne I kept wondering would anything have changed since then.
The first change I noticed was the format. Sunday was Family Day—families from all over Victoria as well as other states, New Zealand and international delegates gathered to hear about and discuss a wide range of topics including coping strategies, relationships and youth living with HD.
Another new feature was OzBuzz—at the end of each day two scientists gave an overview of the day’s proceedings in laymen’s terms. In addition three other researchers gave a summary of their presentations and they were under strict instructions not to use scientific jargon—if they slipped up they received a gong!
Attending the WCHD were those who have been involved with HD research and care over many years. However the greatest surprise for me was the number of young people at the Congress. Bright young scientists, researchers, neurologists and health professionals who have developed an interest in and a passion for HD.
Also present were many young people from families affected by HD. Fresh, young people ready and willing to carry on the mantle started by others some forty years ago.
I was really excited by this and it’s my hope that there will be young, new, enthusiastic people willing to join our Board at our Annual General Meeting on 5th November 2011.
If you would like to discuss the possibility of joining the Board of Huntington’s NSW, please do not hesitate to contact me at robyn.kapp@ahdansw.asn.au
I look forward to seeing you at our AGM.
In friendship,
Robyn Kapp
President
