Glasgow The world parkinsons congress

swept · 10-02-2010, 07:38 PM

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:

Good evening Ladies and Gentlemen.

I am truly honoured
to have been given the opportunity
to address this
the Second World Parkinson Congress.

As you know
the patient address at the First Congress
was delivered by Michael J Fox.

I have been a fan of Michael's since I was a teenager.

One of my first trips to the cinema
was with my sister Christine
to see
"Back to the Future" .

I thought it was a fantastic film.

As we left the cinema
I said two things to Christine.

The first
I have no problem with.

I said:
"Michael J Fox is so cool.”

The second statement
I am now not so sure about.

I said:
“I wish I was just like him".

Four years on from the first Congress
I am delighted
to welcome you to Scotland.
Many of you are new to Glasgow
and I am sure you will enjoy your stay in this wonderful city.
Glasgow is known throughout the world
as a city of culture,
as a city of invention and industry,
and
as you will discover
a city inhabited by colourful,
humorous
and optimistic characters.
For me
Glasgow is a great place to have Parkinson's.

It is also the ideal place
for our community of carers, clinicians, patients and researchers,
to come together
and plot the demise
of this
horrific disease.

As a patient,
I extend a particularly warm welcome
to the clinicians and researchers.

In the past four years
you have been responsible
for the improved understanding of Parkinson's,
for the developments in methods of treatment,
and for the identification of compounds
with the potential
to eradicate this unforgiving condition.

One day,
you will cut the key
that will unlock our bodies.

On behalf of the patients and carers
I thank you wholeheartedly for your work.

All of us arrive at this Congress
with a common goal.

To improve the lives of people with Parkinson's disease.

Everybody in this room has something to contribute.
The clinicians and researchers
bring extraordinary science
and potential therapies
to be discussed and dissected.

But this
Is not just a science meeting.

This
is a Congress.

This
is a gathering
of the whole Parkinson's community
and the patients and carers
bring an extraordinary contribution too.

We bring the experience,
we bring the knowledge,
and
we
bring
the passion
that comes
from living with this disease.

The value of this experience, knowledge and passion should not be underestimated.
The patients and carers bring something else to this Congress.
Something
that only a person
who lives with this disease
day in
day out
can truly understand.

Urgency

What Martin Luther King referred to
as the fierce
urgency
of now.

I’ve only been diagnosed
a few short years
and already
I have had enough.

My wife
and my two little girls
have had enough.

My friends
who have been walking miles,
running miles,
and swimming miles
to raise awareness
have seriously had enough.

Their aching limbs
and cramped feet
long for a cure almost as much as mine do.

A cure that’s been sitting tantalizingly
below the horizon since before I was diagnosed.

A sunrise waiting to happen.

Every day
I ask myself what can I do?

As a group of patients and carers
what can we do?

What can we offer
to advance the work
of you,
the clinicians and researchers?

We can offer you commitment,
we can offer you cooperation
and we can offer you collaboration.

Clinicians and researchers
we can be your Advocates.

As Advocates we can dispel the myths
of Parkinson's.
The outside world believes this is a disease of elderly.
We know it isn't.

The outside world believes there are drugs
that will see you serenely
through your life.
We know there aren't.

The outside world believes the cure
is five years away.
We know people who were told that 30 years ago.

As Advocates
we can mobilise ourselves
to deliver volunteers
for clinical trials
more quickly.

As Advocates
we can become positive nuisances;
pestering politicians,
badgering budget holders
and nagging decision-makers.

As Advocates
we can express ourselves
and the concerns of our community
in a way which will deliver results.
As a community of Parkinson's Advocates
we can be a resource for you
the clinicians & researchers.

But to be effective
we need your commitment,
we need your cooperation
And we need your collaboration.

We need your support
and your encouragement
to bring the value
of our experience
knowledge
and passion to bear.

We need your guidance
to plan our journey,
to point us in the right direction,
and to propel us to the destination
all of us here
want to reach.

A partnership of equals.

This Congress
is not just for the scientists to demonstrate
what they hope to do for the patients,
it is also an opportunity
for us
the patients
to demonstrate what we can do to eradicate Parkinson's.

If the delegates whose life’s work is Parkinson's,
collaborate with those who live with Parkinson's,
together we can deliver a future without Parkinson's.

But the road must start here.

The opportunity exists this week.
In this city.
At this
Congress.

Urgency. Ladies and gentlemen,
Urgency.
The fierce urgency of now.
Now is the time to realise the promises of science.

Now is the time to bring our urgency to bear
and deliver a future of hope for the victims of this disease.

Now is the time
for a steady hand,
a strong voice
and a keen sense of smell
for the opportunities that await us.

A steady hand.

A strong voice.

A keen sense of smell.

I had them once.

I want them back.

Welcome to Scotland.
Welcome to Glasgow.
Welcome
to the World Parkinson Congress.

Thank you very much.

pegleg · 10-02-2010, 08:42 PM

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

swept · 10-03-2010, 06:41 AM

Quote:

Originally Posted by pegleg

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

This is our moment every contribution of value.
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

lindylanka · 10-03-2010, 12:28 PM

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

girija · 10-04-2010, 09:19 AM

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

Thelma · 10-04-2010, 12:39 PM

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

indigogo · 10-04-2010, 01:33 PM

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

bryn · 10-04-2010, 03:13 PM

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

Conductor71 · 10-04-2010, 08:22 PM

Quote:

Originally Posted by girija

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

Hi Girija,

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

swept · 10-04-2010, 09:20 PM

Quote:

Originally Posted by lindylanka

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

Home Lindy never said goodbye to you and the gang because its not goodbye
,xChris (purps slurps pdjunction)

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