I was looking forward to the meeting in Germany this year as I had never been to Germany before. It was more exciting for me as JHD had a much bigger part in this years agenda. It was also the chance to meet up with old friends and make some new ones.
The Friday and Saturday were the meetings of the European Huntington's Disease Network. On the Friday we had presentations on "Weight loss in HD", "RNA therapeutics-a cure for HD or a dream without a future?", "Apathy and depression in HD" and "Self medication".
In the afternoon we split into our working groups. I am part of the JHD working group. We discussed the compiling of the new JHD handbook and different chapters being 'pieced together' for Oxford University press. We also talked about the 'frequently asked questions' which is available on the E.H.D.N website. Another topic was about arranging a 2 day meeting for assessment and videoing for a new rating scale. This so far has been mainly U.K oriented, but hopefully it can be arranged for other families in other countries to be involved. We ended our meeting by discussing 'Standards of Care and survey of treatments', to be reviewed and hopefully generalized. All the working groups gave a brief presentation then the meetings were finished for the day.
We all gathered at 6:45 to go for a 'Gala Dinner' on a paddle steamer, with a live Jazz band. It was a great night, with great food, music and company. The highlight of my whole time in Germany was when the boat docked.Jimmy Pollard introduced me to Nancy Wexler and the three of us walked together back to Nancy and Jim's hotel. We each held one of Nancy's hands. What a lovely, lovely woman!
Unfortunately I had to leave the meeting early on Saturday as my blood sugarlevel had dropped and I wasnt feeling too well. The Sunday was the start of the World Congress on Huntington's Disease. This year much of the meeting was split into three parts: Scientific,Clinical and International Huntington Association presentations.
I attended most of the latter.Jimmy Pollard's presentation was amazing as usual, even though when he asked for volunteers and happened to find me a couple of times (Having a shower will never be the same again! LOL, its a long story).
There was also a presentation by the girls from the Scottish Youth Project, four young ladies who were very professional, informative and very touching. Their presentation showed the progress that has been made in Scotland in the last five years, how families have been helped so much due to the Youth Project. It made me so proud to be Scottish; the girls were very brave.
I could go on writing and writing but no doubt you are all falling asleep already. One thing that I can say is that many people are working very hard to help families that encounter H.D, whether it be trying to find a cure or helping to cope with the everyday pressures; these people are dedicated.
Take good care.