Huntington's Disease World Congress 2011
For those of you who do not know me my name is David Tovar I have been a long time member of the NYA and Huntington’s Disease community. I currently am a senior in college in Colorado where I am studying Political Science and Public Administration with hopes of going into the healthcare field to aid families that are affected by Huntington’s disease. I grew up in an HD family that was always open and forthcoming about what was going on in my family and what I could expect and how I have a 50% chance of carrying the gene that causes Huntington’s disease. From a young age I always knew that I wanted to do something that would benefit the HD community, with the National Youth Alliance and the Huntington’s disease society of America I feel that everybody has the ability to make a difference.
I have been attending HD conferences and events for most of my life, my first was the HDSA National convention in Washington D.C. over a decade ago when I was just a kid. At the time I was overwhelmed with what was going on, but I kept attending year after year. This year I was given the amazing opportunity to attend the HD World Congress held in Melbourne Australia where the world’s finest researches, clinicians and community members were able to be present. Being able to attend an event outside the United States was an eye opening experience to see how other organizations and established groups conduct themselves within the global HD community.
The first day of the event was an international day that was geared towards youth, coping, families and caring. Matt Ellison, Wayne Vallance and I sat in the groups together and found them all to be extremely interesting, learning what techniques and methods are used by the community. On Monday when the Congress officially opened I was able to meet more of the youth and families, many were interesting in the NYA and wanted to start their own youth collation in Australia. Matty was able to give a lot of the families insight in to youth organizations with his own experience in creating Huntington’s disease Youth Organization “HDYO.” We were able to have a group discussion about starting a youth organization in Australia with Greg Chaine and Michelle O'Brien along with many other Australians. They were very enthusiastic about getting youth involved and active in their communities.
The World Congress was a fascinating event, it was very similar to the HDSA national, but was more research based with scientists from around the world giving their results from trials and research. It was amazing to see how many people were able to attend all the continents (except Antarctica) were represented at the congress and it was astonishing to think of all the time people had put into organizing the event. A highlight of the event was Oz Buzz and offshoot of HD Buzz, a mock news cast; it was presented by Charles Sabine, Jeff Carroll and Ed Wild that featured as segment where researched were invited onto the show, but had to explain their finding in plain English so that anyone could understand. If the researcher was able to perform the task he or she would receive the “No Bell Prize.”
Outside of the Congress I was able to do a bit of sightseeing and meet the natives with Wayne and Matty. We walked around the town, rode on the train and even took a boat tour in an epic search for food; Matty even braved being forced out onto the ledge of one of the highest buildings in the world. We ended most days by trying to meet new people and see new places. The World Congress on HD was an amazing event that I am glad I could be a part of. I met so many new remarkable people that I will never forget and I am hoping I will be able to see again soon. With the introduction of a new youth organization in Australia and around the world I am hoping that the NYA will get the opportunity to have a relationship with them and many other NYA members will get to have an experience like I was able to have.
Highlights of the World Congress:
- Martha Nance’s Team-based care approach to Huntington’s Disease
- Research on the onset of HD and its links to stress and other environmental factors.
- Understanding reasoning abilities in HD
- Beyond the patient: Broader impact of discrimination among individuals at risk of Huntington’s disease.
- Health-related quality of life in Huntington’s disease.
- OZ Buzz
- Being able to connect with people from around the world!
Improvements for the next congress:
- More sessions dedicated to youth and issues pertaining to them.
- Giving more opportunities for young people to attend the World Congress.
- Making some of the research seasons more understandable for the majority of people.
- Having more types of sessions (clinical, family, care, health and wellness)
- Expand the congress so that more people from more places are able to come.