Second day at HDSA National Convention |
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It felt odd this morning not to participate in the Team Hope Walk. I just cannot walk fast enough to keep up with the flow, so decided to skip it for the first time. Sherri and Charlotte did the walk, however, so I made sure I got my shower in before they returned from the walk. For the first time, a lovely breakfast was provided as part of the registration fee. Writing this message two weeks later, I have forgotten exactly what was served. It was a bit annoying to sit there with a table full of dishes while listening to the keynote speaker Dr. Michael Hayden, MD, PhD from the University of British Columbia. He is a native of South Africa, son of a single mother, who came to the US in 1980 on a green card. Marjorie Guthrie and Ted Kennedy were helpful in his early career. He talked about life balancing between light and darkness. He cited Robert Kennedy's "Ripple of Hope" speech which brought people together against discrimination. "Don't trust the government; find out for yourself." I was not familiar with this quote which is attributed to Marjorie Guthrie: "On the road to a cure, you have to provide care." He also mentioned Tim McGraw's song "Live Like You Were Dyin'." On a more scientific note, he talked about getting rid of the gene mutation of HD by selectively silencing the bad gene. He mentioned a couple of medications which are not currently available in the USA, Laquidimod (a Parkinson's and MS med) and Pridopidine, which is a psycho motor stabilizer. His words were very inspirational. "Dream impossible things, and have hope for the tremendous opportunities. All of us do what each of us can. Some day HD will be over, and our children and grandchildren will be safe from HD." A movie trailer was shown. "Alive and Well" is a documentary about HD. The young woman who directed it is a childhood friend of Liz Weber from the Pacific Northwest, with connections with Pearl Jam. After the trailer, she received a standing ovation. (Sorry, I didn't get her name.) For you Facebookites, you can get more information on Facebook/Alive & Well. Dr. Hayden's entire message is available through HDSA's website (www.hdsa.org). Next session was Research Hot Topics presented by Dr. Ed Wild, MD, PhD and Dr. Jeff Carroll PhD entitled "The Drugs are Coming." These men are from www.HDBuzz.net. They mentioned that CHDI is spending $100,000,000/year on HD research. Dr Wild is from London, and Dr. Carroll is from Western Washington. They said they would mention 10 exciting things, 5 big things and 5 specific things to watch for. I got the 5 big things: (1) HD is the most curable brain disorder; we know what causes HD (2) the Global HD Community (3) a Golden Window of Opportunity to push the symptom onset forward to after people usually die (4) having symptoms doesn't mean it's too late and (5) Science is cumulative. I didn't get the 5 things to watch for. Sorry. They said that "HD Research Needs You." Scientists want to slow down the progression of HD and keep people well one day at a time, and slow the damage, manage the symptoms, and extend the lifespan. Relative to the Enroll study, "There's never a good time to have HD, but this is the best time in history." Again, this talk in its entirety is available through HDSA's website (www.hdsa.org) Went up to the hotel room and had a tuna sandwich for lunch. There were three afternoon workshop time slots, and I attended them, but I think it was information overload. I do recall the last one, though, on "In Home Care Options." Excellent presenter. Went back up to the room to change into more formal clothing for the evening Gala banquet, awards ceremony, and dancing. We seven women riders sat together plus a Hispanic couple originally from Costa Rica. Their names are Gustavo and Nuria. Nuria said that to her knowledge, her family is the only one in Costa Rica with HD. Nice dinner, chicken. The National Awards were presented, and of course the ritual candle lighting ceremony (blue glow sticks). Then the fun begins, with the music to "We are Family." Lots of dancing. All the gals from our table but me went up to dance, but I just watched until "The Electric Slide" music came on. I just danced near our table. One of the Wervers, Frances, came over to dance as did Roberta Brink. Enjoyed that. Didn't stay up real late because we plan to leave Jacksonville at 6:00 am or so. It was a good convention overall.
With love from Jacksonville, |
