Points taken. Personally I've never been a big fan of standardized Web sites (admitted bias due to the fact that I'm a Web site developer) but I agree that there are a lot of advantages to that idea that would definitely help out the Chapters and Affiliates, so I would support it too. I strongly suspect that Fred T agrees with you too.by SteveI - Huntington's Disease Support Center
Of course many others suggested it to HDSA before I did it so I can only say that I had the opportunity to encourage it and I took it.by SteveI - Huntington's Disease Support Center
It certainly wasn't my intent to invalidate anyone's feelings about the new message board. I was instead offering my feelings on the subject (which I assume is also valid) because the tone (and title) of the entire thread (not anyone in particular) was that there was some competition underway. I thought it was a good question and worthy of a well thought out response ? especially since I foundby SteveI - Huntington's Disease Support Center
We can't fuss at HDSA for not reaching out to the HD community and then fuss at them for trying to reach out. That's hardly fair - plus I personally encouraged them to do this. And I have a very good reason for it. I want as many HD families to join the network of cyber-support as physically possible. That?s my mission. The membership of HDAC message board is awesome, but as Marsha saiby SteveI - Huntington's Disease Support Center
Well, I've already registered and started posting. I even reported a possible problem to Fred T. I thought I'd get in early and get it somewhat working before Barb registered and started doing her thing.by SteveI - Huntington's Disease Support Center
Outstanding Jane! Thanks for the update and please keep up the great work you're doing in keeping the momentum going. Steve Iby SteveI - Huntington's Disease Support Center
With Eric's permission I've removed the "Discouraged" thread. I know that our membership here is rather rabid about the removal or editing of threads so if there are any questions about the reason please send an email to me with your questions at stevei@hdac.org. Thanks, Steveby SteveI - Huntington's Disease Support Center
Thanks for the heads up Barb. It seems really odd to me that a message board that only has you, me and a couple of other folks looking at it has produced more spam in the last few days than we've had on this site over the last year. I think there is some automated spam generator in action there, so I apparently neeed to beef up the registration process.by SteveI - Huntington's Disease Support Center
I'm not sure the point is being missed, but it's certainly worth revisiting. Researchers want to avoid the use of the word cure because they really aren't shooting for a cure ... that bar is WAY too high. Since we have researchers on the board at HDSA we have had a few discussions about whether or not we should use the word "cure" in the mission statement. I usually argue that the HDby SteveI - Huntington's Disease Support Center
I?m confused by the sudden need by some to scare people away from supplements - especially since supplements are essentially all we have (beyond excercise). First, I'm really hopeful that the creatine study by Steven Hersch will deliver positive results. I sat in on his presentation and he's looking for participants in this three year trial. This is an opportunity to be one of our "HDby SteveI - Huntington's Disease Support Center
Which symptom did it reduce? I didn't see the episode but I sure would have liked to. If it was chorea then, of course, tetrabenazine might have been the treatment. Anything else would have been speculative - but then again, speculation is right down House's alley.by SteveI - Huntington's Disease Support Center
Tonight I met Laura and Matt. Tim and Patti and the others from Virginia who first went to the capitol were honored tonight as was Misty and her colleagues from San Diego. Katie won HDSA Person of the year!!!by SteveI - Huntington's Disease Support Center
This is Marsha. Last night we went out with the Board for a barbecue dinner. Unfortunately we are in the one part of North Carolina where the barbecue sauce is vinegar based so I ordered the fried chicken. This morning we attended the research forum, which was outstanding. It's going to be posted at the HDSA site in a few days so all of you can see and hear it for yourselves. We grby SteveI - Huntington's Disease Support Center
I was in a not so much fun board meeting most of yesterday so I can't tell you much about what went on yesterday. The opening ceremony was enjoyed by many. Jeff Carol introduced himself to the community and shared his personal HD story. I have a few photos that I'm going to try to post sometime today. It's almost time for the opening ceremony and as always I'm late. Later.by SteveI - Huntington's Disease Support Center
In Dr. Hayden's experiment, the HD mice were genetically engineered to be caspase six resistant and they did not develop the disease. The reason for this is that caspase six did not cleave the Hd protein into toxic fragments that get into the nucleus and cause problems. This suggests that a caspase six inhibitor should be given early before damage begins to occur. That said, the process of fraby SteveI - Huntington's Disease Support Center
Thanks Barb. We just returned from the Thursday night leadership event. HDSA transported 3 or 4 bus loads of national and chapter board members over to the Natural Science museum for dinner and networking opportunities. The food was good and I enjoyed myself even thought it was alcohol free. Yes, I said alcohol free. It was one of the most intense networking get-togethers I?ve attended inby SteveI - Huntington's Disease Support Center
We have arrived! We are slightly scarred but not in too bad a shape. 1/2 mile before we arrived at the hotel we had to slam on the brakes to avoid a collision at the highway exit. Unfortunately the person behind me didn't quite manage the braking process very well and duck-tailed into our car. Since I saw what was happening behind me I was able to slip over to the left a little and prayed I wby SteveI - Huntington's Disease Support Center
Hi Debbie, I activated your account. Everyone who attempted to log in before I "flipped the switch" for automatic approval will have this same problem. Good luck and let me know if you have any more problems. Steveby SteveI - Huntington's Disease Support Center
Sitting here in the bar at the Senator hotel in Augusta, MAINE enjoying a local brew called Red Ale and a crab pizza - a first for me. And simply amazed by Barb's testing talent. Barb, did you work in a QA department in a past life?by SteveI - Huntington's Disease Support Center
Youse guys are brutal. At least I knew the state started with an "M".by SteveI - Huntington's Disease Support Center
I'm heading up to Augusta, Maine on a work related trip this weekend. While sitting in the hotel I'll have time to tweak the message board. Look for good changes by Monday of next week.by SteveI - Huntington's Disease Support Center
Thanks for the feedback Barb. That was very useful and I agree with you. I'll see what I can do with it to make us both happy with it. And yes, when the switch is thrown there will be only one message board, but there will be two forums ... one for Espanol and the other for Norte Americanese. I don't see any reason to have the separate Advocacy forum, so I'm leaning toward merging that intoby SteveI - Huntington's Disease Support Center
Thanks for the update Trey. Glad to hear you're doing well and hope the tour is a great one. I sure hope I can work my schedule to attend one of your shows. That would be awesome. I've done more than my fair share of dancing to "Boot Scootin Boogie".by SteveI - Huntington's Disease Support Center
The new site is hosted on a new ISP that provides 24 hour support and all sorts of bells and whistles. The one that HDAC.org and HDlighthouse.org is smaller but doesn't provide all of bells and whistles. Hosting isn't their bread and butter but I've personally met their tech team and they've gone out of their way to help me when I've asked. I just happen to have dealt with these guys fby SteveI - Huntington's Disease Support Center
I'm looking for volunteers to register with and play with the new message board over there and provide CONSTRUCTIVE criticism. I finally opened it up for general use. Even though it is not in its final look and feel by any stretch of the imagination I wanted to get some feedback on its current usability before diving in and making changes. Thanks in advance, Steveby SteveI - Huntington's Disease Support Center
This was shared with us. I thought you'd enjoy it. http://www.cirm.ca.gov/SpotlightOnHuntingtons2010_Sherry CIRM is the California Institute for Regenerative Medicine; the California tax payers funded it with $3 billion for stem cell research in 2004. CIRM has given millions for Huntington's disease research at UC Davis for Dr. Jan Nolta and UC Irvine for Dr. Leslie Thompson. CIRM haby SteveI - Huntington's Disease Support Center
Too funny, but he's still lookin' good. Thanks for sharing! Steveby SteveI - Huntington's Disease Support Center
Barb, I have to agree with ya. Wayne certainly IS a nice guy. Wayne, Thanks for the insight into programs of HSC! Steveby SteveI - Huntington's Disease Support Center
Awesome job Laura. Thanks for sharing it, Now where did I put that box of tissue.by SteveI - Huntington's Disease Support Center