Yes, thank you Robi. They actually had dr hayden and my neuro dr blair on global bc news two nights ago, and did an announcement about this trial being the first possible cure for hd, yes, they used the cure word. Me and Ray watched the announcement together, and I thought, I got to see this announcement in my lifetime, yes, and I got to share watching it with someone I love, nothing better thanby Barb - Huntington's Disease Support Center
So yesterday the HSC facebook page did a post, about this trial, and that patients in Vancouver are beginning the med this month. Marsha, I have not read the article, only read the headline, because my concussion is really bad again, went on a bus ride yesterday and the bus driver was slamming the brakes on, and I'm paying for it now. So what I'm saying is I'm not up to reading the article at allby Barb - Huntington's Disease Support Center
Thanks Brent, but now that's even more clear than mud. A year ago, I had no problem finding the trial criteria online, and it said the criteria was early stage, with chorea, so they could use the chorea to judge how the stuff was working. Well, I'm early stage, with no chorea, so I didn't look into it, because from what I read I would not have qualified.. That info was easily found a year ago, noby Barb - Huntington's Disease Support Center
Thank you Robi for posting, and for letting us know when it will be listed on the trial site. And Brent, thank you also, that definitely explains a lot, but also raises more questions. I guess as long as I've been around the forum, I've never heard of participants being hand picked, I'm kind of shocked. It seems really strange, because usually trials let people know when they are recruiting, so pby Barb - Huntington's Disease Support Center
Well, I just emailed Robi, he should be able to give us some info, ANY info would be very much appreciated, even the HSC has nothing on their websiteby Barb - Huntington's Disease Support Center
There is no way they can hand pick people. This trial is a small one, but it is supposed to take place in Europe and Canada, and it is supposed to take place here at ubc in Vancouver. I cannot find anything online, or on the ubc website about the trial. I guess what I'm saying is first I'm so glad you posted this, I've been waiting to find out when it starts. What makes me mad is, here an articleby Barb - Huntington's Disease Support Center
By the way, I was very glad to see you came back, and then very pissed with what you said. So there ya go, and I aint no shrinking violet, oh yes, but I think faith should be hidden? "for fear of offending"?. Hell no, you've pissed off the wrong person, because guess what, "fear of offending" does not even exist in my voculabulary. Fear of offending?????? Hell no. It called haby Barb - Huntington's Disease Support Center
I'm glad you came back, but, please don't slap me in the face by saying you do not hide your faith for fear of offending. I never once spoke of being afraid of offending. I was speaking of having the guts and humility to care more about the needs of others, than your own needs to boast. So do not twist my words, and go for it, here's your platform. Oh yeah, I also do not crumble in the fear of ofby Barb - Huntington's Disease Support Center
I don't understand how something like this can be put out by isis, with no info on the clinical trials, I've tried to find something somewhere online about the trials, who's recruiting, who qualifies, everything like that, and I cant find anything. And I don't know what the dif is between a phase 1 trial and a phase 1/2a trial is. It was originally supposed to take place in Europe and Canada, butby Barb - Huntington's Disease Support Center
Yes, I originally read it would be stage 1 trial, I wonder what a stage 1/2a trial meansby Barb - Huntington's Disease Support Center
Well, I'm sorry your reaction is out of proportion to anything suggested here, and that you didn't even want to talk with everyone about this. I would have been willing to hear what others have to say, even knowing that some might understand where I was coming from, and that some might not. You know, putting aside my concerns about some being hurt, and say if your thread had gone forward, let's sby Barb - Huntington's Disease Support Center
Yes I said hd is bigger than one religion, but do not imply that I meant that hd is bigger than god, or to put god in a box. I did not say that or imply that, in any way shape or form. I said it is bigger than one religion because it effects so many people from all religions and all walks of life, so just trying to have a decent conversation about this, that's all.by Barb - Huntington's Disease Support Center
This was only my opinion, and what was said a few years ago. I said I hope others will post their ideas, to get an idea how people feel about it now. Please don't assault back about putting god in a box, it's about being considerate to everyone. Jesus said, not to offend little ones, if that's what you need to hear, and as far as I'm concerned here, everyone here, no matter what they believe orby Barb - Huntington's Disease Support Center
But let me also say I think this is very kind of Pal, and if most feel this way, she might like to put out a request that people can send her requests by pm, and im sure some would like thatby Barb - Huntington's Disease Support Center
I think doing this through private messages to those who want to, would be a much better format for this. I am Christian, and this bothers me. HD is bigger than one religion. HD effects everyone, from all walks of life, all religions, and non religious, straight people, gay people, and trans gender people. I feel people are very overwhelmed as it is with hd, without having religion shoved in theiby Barb - Huntington's Disease Support Center
Here in british Columbia, our hd clinic knows our numbers, because everyone with hd in bc goes to the clinic for genetic testing, and for yearly exams. Maybe because of our medical system, we get most of the patients into the clinic. They were able to tell me one day on the phone exactly what the statistics are for bc. They said the rest of Canada is 1 in 10,000, but here in bc it's 1 in 6,000. Iby Barb - Huntington's Disease Support Center
Actually trials are talked about on this forum all the time. Most people with hd go to a neuro at a coe, here in Canada we all go to the hd clinics, that are also sponsored by hd society of Canada. You don't know why there aren't enough people for the trials. Not knowing about the trials is a very tiny percentage, because people are told about trials when they go into their hd clinic. You don't uby Barb - Huntington's Disease Support Center
I just watched the video, and he seemed like such a nice guy, and he went right to the top I had no problem with Obama. I don't feel Obama was being rude to him, I liked how he made fun just a little, it felt inclusive, having fun with him, not at him, and that helps a person feel included and normal. Anyways, back to the subject. I watched the video, then I read some of the comments below the vby Barb - Huntington's Disease Support Center
I posted this months ago, thank you for asking, everythings still the same, and I'm fine, welcome to the forumby Barb - Huntington's Disease Support Center
That's because you haven't read this Steve This explains everything:by Barb - Huntington's Disease Support Center
Awe, thank you Willby Barb - Huntington's Disease Support Center
Unfortunately Will, I believe you have to have measurable physical symptoms for this trial, but someone correct me if I'm wrong. Glad you love needles Will, not me! LOLby Barb - Huntington's Disease Support Center
Awe, thank you Kelly...lots of love to youby Barb - Huntington's Disease Support Center
Way to go Will! Such a priviledge for all of us to know youby Barb - Huntington's Disease Support Center
My sister has raised $750.00 for her run so far, very proud and excited for her. Way to go team Okanaganby Barb - Huntington's Disease Support Center
My sister Laurie is doing her annual run for HD, and here is a link for her page: My dad passed away just over a year ago from HD, he was almost 82. My dad didn't even get hd until his mid 70's, and his first four years of hd, he really enjoyed taking the bus to his hd support group. My dad did really well with his hd until his last year or two, when panic attacks set in bad. My dad was a memby Barb - Huntington's Disease Support Center
Thank you everyone. Sorry, I just got down and let it get to me, but I'm definitely going to get to the bottom of this.by Barb - Huntington's Disease Support Center
That was a wonderful article Kelly. Your love and memories of your sister really shine through, and it's wonderful to hear how you're doing too. Another well-thought article for sureby Barb - Huntington's Disease Support Center
Life is just so discouraging right now...feel like life is just passing me by, slipping right out of my hands, can't even grab hold of it. Sounds like hd huh, but nope, who would think, post concussion syndrome taking my life away 10x worse than hd, it really sucks But, oh well, it will get better, because i'll be darned if I have fought my hd, only to have a concussion take me downby Barb - Huntington's Disease Support Center