Parkinson's: our 4-year shot


The World Parkinson Coalition (WPC) is holding their 4th World Parkinson Congress in Portland, Oregon September 20-23rd NEXT YEAR, 2016. They've dropped the last 's' after Parkinson's - fair enough....annoying anyway.
I've heard the first podcast already. It was 30 minutes (approx), fascinating and well presented. DBS was alluded to, but not addressed. If you scroll down on the lower link, you'll see why. What was addresses was the rather sad confession that after about 50 years, there's presently no other pharmaceutical alternative than L-Dopa. Sucks, considering. But there's a lot of excitement and hope......
The thing with the WPC is it's really the motherlode of hope for PD (Parkinson's...(sigh) - do get told off for using acronyms, even though I ALWAYS explain!). All those Orgs, Assocs etc. are partners of this auspicious body. They have an impressive 172 Partners from 46 Countries, so my guess is if you wanna talk to who wears the pants in PD research, it's gotta be the WPC. So methings....just guessing here...if there was someone who's in the know about future potentials in Stem therapy, Gene therapy, crossing the blood/brain barrier (BBB), R&D (haha...work it out!), med-tech, pharmas....i.e. how to stop, slow or/and cure PD; it's gonna be them, no?
What would I ask? Why can't we all just GET ALONG?
Actually, it's not that we don't get along, it's because of a-g-e-n-d-a-s. Not, that doesn't mean anything but 'agendas', but it gets your attention. Individual 'partners' are hampered by politics, who pays in more, and just good ol' ego. Hell, it happens; suck it up. There are some truly magnanimous members and influencers within those partners, but they can get hog-tied...or simply and honestly, single-focused.
We, the peeps, have a unique chance to make a difference to get all these branches of this vast tree to work for the good of all - the trunk; without which, we'll have no tree. With me so far?
My agenda? Do all possible to encourage the WPC to get all their ducks in line (sorry, animals on the brain!). Frankly, it's a crap-shoot to leave it to one 'Partner'. We need THEM to decide on the most promising of all the plethora of promises out there, cull them down, and use the collective monies to WORK TOGETHER.
OH, did I mention they only have these Congress' every FOUR years? Wanna wait? Not me.
COMMENTS:
Executive Director at World Parkinson Coalition
Hi there, Lisa! Thanks for highlighting the amazing Podcast program. Don't worry, DBS is on the list... you just have to wait a bit for that amazing talk to be posted. Regarding the 4 years, the WPC is actually every three years now. It was 4 years between 2006 and 2010, but since 2010 we've switched over to a three year cycle, so 2013 in Montreal, 2016 in Portland, and 2019 in a location to be determined. Looking forward to seeing you and many others in Portland!
Lisa Vanderburg AUTHOR 
Independant Editorial Writer at Crackinthenut
whoops - thanks for the correction...every 3 years. Even better!
Rod Sagarsee 
CIO Brinks Gilson and Lione
Well said Lisa and I concur at every level. Having had bi-lateral DBS, I have a personal interest, as well. Thank you for the article.
Elaine Benton 
Author & advocate for Gaucher disease & PD, writes weekly on "chronic disease" for The Huffington Post
As usual Lisa, you've hit the nail on the head and pinpointed the problem. A well written article. Thank you for speaking out and being a voice for those who have none. I am in my 8th year of living with Parkinson's and I most certainly don't want to wait another 4 years.
Dilys Parker 
WPC2016 Ambassador at World Parkinson Coalition
Nice one Lisa - brings to mind the Parkinson's Australian logo - Parkinsons, were in this together.
Sandy Ann Humphreys
Student at Laurentian University/Université Laurentienne
I think I understand some Parkinsonian trips as I deal with the shakes every day Like Michael J. Fox but not as severe just in my right hand but noticeable and it is from meds

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