[www.vimeo.com]

For those of you who haven't seen this yet, here's the link to the keynote address from the 2009 CHDI conference in Cannes, France (two weeks ago).

This is powerful stuff; congrats to the speaker, Julie, for an impressive and moving speech (the point of which, I am told, was to use HD's media presence to convey to researchers its long and continuing relevance in society.) She clearly did that (and then some)! The standing ovation was 10 times more impressive in the room, than on camera.

The speech also shows the new PSA for HDTrials.org, starring Olvia Wilde and Peter Jacobson.



Edited 1 time(s). Last edit at 05/13/2009 04:13PM by martoid.

This is brilliant! Thankyou

Ditto! Thanks for sharing this.

Steve

Thank you for sharing

MJGarcia

Thanks for posting this!

Patty

Apparently this keynote speech was controversial. Julie's goal is to encourage the HD community to be excited about and ready to participate in clinical trials so that we can reach a cure faster. But apparently there were many at the conference who were surprised by the "in your face" approach that Julie took.

I loved it. I want more of it!

Steve I

Now I have to look..

Have some tissue paper available.

I don't get it. I'm real upset that i don't get it. I haven't even finished watching the whole video clip, i'm bout 30 mins thru it. I have just sat through the most excrutiating half hour of my life, trying and trying to just focus and pay attention to this. It is the most boring thing i've ever seen, the speaker is soooooo slow, i want to scream it's so excruciatingly boring. Like i just want to know, is this me and hd? What the heck, i cannot get into it at all. Where does the tissue come in, is there something that happens at the very end that is a tissue thing, please, can someone explain or summarize this, because i Cannot watch another minute of this.

Love your honesty, Barb. I wish I had a better computer to listen to things like this to see if I'd have the same reaction as yours or the others' reaction and tell you. I do know that often the Oscar winning movies are deadly dull and preachy to me (The English Patient for instance) so I wonder if I'm a normal person, too. (smile)

Thanks Alice. I finally made myself watch the rest of it. It was absolutely slow and boring, except for the condemnations she made of those that won't test, she said they just keep making babies. Very insensitive. Last 10 mins she did some tearjerker stuff, which i feel was way too over the top. So we have 40 mins of excruciating boring, then her insults, and then her tearjerker finale, which i feel was uncalled for. Just a whole lotta words, and a lot of very boring tv clips. If this is what a conference session is like, i doubt i will ever go to one. Does it get any better than this? I guess because i have hd, i find an on-screen pity party over-the top



Edited 2 time(s). Last edit at 05/14/2009 05:28PM by Barb.

And another thing, she talks about owls and ostriches. Says owls are those that have tested and ready to do any trials they can do. Ostriches refuse to test, and just keep having babies! I found that highly insulting. Although i believe it's good for people to test, especially before planning a family, even so, even though i am for that, i found her approach very insulting to those who are truly truly living every day in fear wondering if they have hd or not. Certainly a nice way to bring up division and barries among our community. I just found the whole thing, boring, egotistical, condemning, and then finally, at the end, over-the-top



Edited 1 time(s). Last edit at 05/14/2009 05:35PM by Barb.

Barb,

This was a motivational speech to the researchers in that room, who needed to be reminded that HD is relavant, that their research matters, and that people are waiting and willing to particiapte. Judging by the standing ovation and lack of dry eyes, that message was delivered brilliantly and affectively. They got it; you missed it. That's fine with me.

Owls and ostriches was Charles Sabine's metaphore (whom she duly credits in the speech.) Frankly, it may be simplistic, but at its core, it's accurate. People would not have to "live in fear wondering if they have a disease" if they just got tested. Knowledge is power. Fear is corrosive. There is no such thing as a "normal life" in an HD family; so there's no sence in trying to expect one.

The HD comminity is in dire need of some straight talk. The "don't worry, we're working on a cure" paternalism of the previous decades has created a generation of patients waiting for a cure to fall into their laps, while they sit on the couch. I have news for everybody, there will never be cure in our lifetime, or our children's, if people don't get tested and participate in the trials.

That is the message of this speech, and it is the most important message in HD today -- it needs to be shouted from every mountain top. Everybody in the HD community needs to wake up and take control of their lives. That's the only way that this will be the last generation with HD.

M



Edited 1 time(s). Last edit at 05/14/2009 06:03PM by martoid.

Martoid, Just wondering......Do you have HD or are you at-risk? or is it in your family? I also think clinical trials are very important, but again......not everybody is emotinally ready to test. I do applaud the people that participate in the trials. I guess I see the points to both sides. (to test or not to test)

I'm gene-positive and have young, at-risk children. Perhaps people would be more emotionally ready if they understood that there is no such thing as "pre-symptomatic"; neuro-degeneration begins decades before onset of motor-symptoms. Of course, our HD community has not been informed of this. Doctors and genetic couselors do not tell us the full truth.

I also have very young children, but I'm at-risk, so they are too. I just found out my father has it, about 5 months ago, so it's still sinking in. Trying to decide when or if I will test. I go back and forth on the issue every week. I know I will test for sure within the next 5-7 years, because I don't want my kids to have to wonder if they are really at-risk or not, like I did. The pre-symptoms are just so vague.....any-one, even people with no hd history could have them. Wish you the best. Thanks for the video, it kept glitching out on me, will try to watch again.

Actually i Did get it, and I didn't like it, and i didn't like the tone of it.

Barb,

You've stated your unwillingness to participate in clinical trials, due to your fear of new medications interfering with your current meds. Anyone can understand your thoughts on this.

To me, this video has a different viewpoint, that is to encourage people who are at risk, or who have tested positive, to join the global HD community to enter HD clinical studies. I see it as a move in the right direction. How can we find a cure if we don't study people who have the disease?

This board has a wide variety of HD persons, from those who have a CAG count of 27-39, and may not develop HD in their lifetimes, to those whose CAG count is 40+, and who will most likely have HD before the end of their lives.

I urge you to watch this video again. Your opinions on this board are important to many, and if your opinion on this video is that it's not worth watching, some people won't watch it.

Quoting you (barb): "I don't get it. I'm real upset i don't get it."

We were not the intended audience for this speech, the keynote was mostly for research scientists and academics who don't know anything about HD outside of a rat model. This speech can make a difference for many of us. Barb, see the bigger picture here, not just your feelings of personal attack.



Edited 2 time(s). Last edit at 05/14/2009 07:07PM by martoid.

Julie, being in the film making business just like Michael Moore, isn't overly concerned about controversy. She has a child who is positive for HD, she's a mom and she wants a cure for her child. To make that happen she needs researchers excited about pursuing treatments and she needs HD people to sign up for clinical trials. No surprises there.

It was shared with me that Charles Sabine wasn't particularly happy with Julie's use of the term "Owls and Ostriches". He used it as a metaphor for a personal decision. Should he be an owl or should he be an ostrich? I can easily imagine how uncomfortable he became when he saw how Julie used it, expanding it as a choice that every HD family member has to make - "Are they an owl or an ostrich?" It's easier to lay that burden on yourself than it is to lay it on others.

Was she indelicate - oh yes. But then again, does being delicate mean that a serious treatment is 10 or 15 years further away?

I think that in her way of thinking, it possibly does.

Steve



Edited 1 time(s). Last edit at 05/14/2009 07:15PM by stevei.