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10-02-2010, 07:38 PM | #1 | |||
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I was privelaged to attend this event and refresh acquaintences with posters from this site,whom I last spoke to many years ago.I have had pd 21yrs I am 50 years old ,Im fortunate I live well with this illness.This congress was incedible,challenging changing times and a unity and passion that you couldnt fail to feel.It may have been posted already but bryn williams speech was inspiring powerful moving,enjoy and use the passion
29/09/2010 Bryn's Blog :: Speech http://www.wobblywilliams.com/blog.aspx Here is the speech delivere in glasgow this week Quote:
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"Thanks for this!" says: | girija (10-04-2010) |
10-02-2010, 08:42 PM | #2 | |||
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Thanks for sharing this. They certainly picked a good person to deliver the opening speech; it sets the tone for the remainder of the conference. (I also like and agree with Bryn's "urgency" focus.)
I don't know why, but I feel in my gut (or head) that we are about to embark upon a new way of thinking about Parkinson's. And I feel it will require us joining up with other neurological illnesses. They have so many similarities. And as Bryn pointed out, we need advocates - there is plenty to do! Even if you are wheelchair-bound, you have a job. I keep thinking of Railynn from Arizonia who posts regularly on the Toronto Listserv (PIENO). She lives alone and is in a wheelchair, but she is doing her part! We're in this thing together! Peg |
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10-03-2010, 06:41 AM | #3 | |||
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The patient is the key to the cause and the path to the cure. Every day a clinical trial every day measured outcomes. We are experts our lives the essentiall link |
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"Thanks for this!" says: | paula_w (10-03-2010) |
10-03-2010, 12:28 PM | #4 | ||
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Senior Member
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The congress was indeed a special event, and Bryns speech was both moving and inspiring. The patient presence and involvement were visible, and it was a wonderful opportunity to meet people from other places with PD. One of the most spoken about things among patients was a need to strengthen the international connections, and grow them into a global PD voice, so I would say to any people who visit the forum who do not yet post, there is no better time than now to join in and help make that a reality, and perhaps your contribution to this forum and in your daily life will help make the difference to others...
It was very inspiring to see the many initiatives that PwP are involved in from helping people to stay in work to building sites that will make PwP more effective in their advocacy. There was so much that was interesting and thought provoking that it will take a while to digest it all. Sessions were interesting, and offered insights, but the overwhelming thing that I will bring away is the amazing people I met, not all of whom have PD, who simply made the event for me.... some from this forum, and you know who you are, and some who weren't, but are equally special. There is a lot still to be done, the science and thinking is not there yet, by any means, but the Parkinsons community has taken a big step forward to better understanding between all stakeholders. We need to build on this............ Lindy |
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"Thanks for this!" says: | girija (10-04-2010), soccertese (10-03-2010) |
10-04-2010, 09:19 AM | #5 | ||
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Member
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Hi All,
Swept, Welcome to the Forum and thanks for posting Bryn's wonderful message. It was the best talk I heard at this meeting. Lindy already wrote about how strong PwP voice was and I feel research and medical community is finally listening to us. Practically every session had scientific as well as PwP's participation. I know it is just a beginning and we have a long way to go. The best part of WPC was PwPs. So what did I learn in terms of cure for PD? I am sorry to say NOTHING and it was very disappointing. A few research talks sound promising and interesting like: the link between coffee drinking and some sort of protection from PD, cellular and cytokine based therapeutics (anti-inflammatory), T cell-based vaccines and stem cell therapeutics. I didnot see anything that would translate into therapeutics right away..... I will post a summary of some topics that caught my attention in a day or two. Girija |
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10-04-2010, 12:39 PM | #6 | |||
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Member
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Sorry to but in BUT could you point the way, if any, to any discussion on misfolding proteins as related to SODI 1 in Parkinson's as related in Alzeheimers and Als.
This work is really interesting and yet so little info out there. Thanks |
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10-04-2010, 01:33 PM | #7 | |||
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Senior Member
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Thelma - the protein targeted in Parkinson's research is alpha synuclein - there's lots of promising research happening in this area. Search for that - maybe that will answer your question
__________________
Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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10-04-2010, 03:13 PM | #8 | |||
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Junior Member
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Thanks for all the kind words about my speech last Tuesday. I can safely say as I walked to the lectern my shaking was not PD related!
Bryn WobblyWilliams.com
__________________
. Raising Awareness of Parkinson's |
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10-04-2010, 08:22 PM | #9 | |||
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Senior Member
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Did you happen to catch the Neurologix's presentation on the results of their Phase II trials on GAD therapy targeting GABA? To my unscientific mind, it at least sounds a better alternative to DBS. I am hoping if Phase III goes well the FDA will fast track it. Laura |
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10-04-2010, 09:20 PM | #10 | |||
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Junior Member
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,xChris (purps slurps pdjunction) |
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