Lrrk2


#1
Yesterday I had the delight of joining other Parkinson's UK members and two members of HQ staff to hear Dr. Patrick Lewis of UCL in Queen Square London explain how he is using his £250,000 grant for research into Parkinson's. His study is of a genetic protein called LRRK2. Dr. Lewis explained the who, why, what, where and when in an absorbing presentation and then conducted the group in a laboratory tour. I found the visit most useful. The complexity and precision that must be maintained over weeks or months of procedures, any one of which is critical, left me with nothing but admiration for those involved in finding a cure. I have made a short video of the visit which if approved will go up on the Parkinson's UK website.

That elusive cure is decades away, but the scientists can see the way forward and there is optimism in the research community. I have seen for myself that the research money is well spent.

Thanks to Katie Le Blond and Emily Hughes for chaperoning the visiting group.

#2
Hi,

This news is all so depressing that a a cure is decades away ["That elusive cure is decades away"]. Is this what Dr Patrick Lewis of UCL said, or has this come from another source?

#3
Dixie, I am an unreliable witness, but I had my camera with me and have put together a 3 minute video to give a flavour of the site visit to the LRRK2 project which includes his answer to the question of when will there be a cure. You can watch it here:
http://vimeo.com/30757216
The video is my personal effort it is not an official video, but Parkinson's UK may include it somewhere on the web site.

#4
How I agree with you Dixie - my heart plummeted when I read that a cure is possibly decades away.

My husband is in his second year since diagnosis and I hope with all my heart that they are closer to a cure than this.

#5
A cure decades away! That's really depressing and surely not how science works ie isn't there always a Eureka moment or a breakthrough which is totally unexpected and unpredictable. One of the things I was impressed with when I started looking at Parkinson's Research was the huge variety of projects and the commitment to finding a cure. After all look at cancer 10 years ago, the survival rate was much lower. It's important to be optimistic, isn't it? :smile:

#6
Experience of time is not a constant. Waiting for light to catch up with the particles you just fired from your gun may seem a perplexing delay to a scientist at the CERN Swiss laboratory while another Swiss scientist may complain about the rapid speed of the melting glaciers. Between these extremes there will soon be a cure for Parkinson's. Soon - rest assured.

#7
We were told by a Leicester research scientist at the recent Market Harborough PD UK information day that the knowledge about PD has doubled in the last five years and as all these discoveries complete the picture I take this to mean that the pace is accelerating towards a cure. However just as cancer is now differentiated into different forms such that we no longer whisper (as happened 60 plus years ago when I was a child) "He/she was diagnosed with cancer and died" but that he/she has survived/died of a specific cancer, we may find that there are many different forms of PD some of which will be conquered sooner than others but all of which will get improved treatments.

#8
Thank you, Eileenpatricia, for your rather more optimistic and uplifting words.

#9
OK, here it is in black and white.

"There will be a cure for Parkinson's available on prescription by the end of the year."

Does that make you feel happy? Of course it does. It is true. Every word of it. I will not entertain any view to the contrary. I did not say what year the cure was coming. 2029 it will be. Or was it 2092. Oh bother! I have forgotten.

Sadly, in the realm of the research world 10 to 15 years is the usual time to approve a drug for use. There is no cure to test. The initial research has not got that far. When I wrote that a cure is decades away, I was spot on.

The lesson is to forget a cure if you have Parkinson's and make the best of the condition as it is now. Every day love and laugh as as you can. Smile.

#10
Oh dear. I am in so much trouble. Dear moderator, please, please, pretty please, rescue me from ridicule by correcting my poor English in my previous post.

I promise to take more care in future. I wish I had heeded the advice given to me. "It is better to remain silent and be thought a fool than to speak and remove all doubt."

By way of compensation here is a joke I heard on R4 The News Quiz, "The forestry commission is to axe 250 posts."

OH! Axe this post please.

#11
Galaxy Surfer – thanks for your amusing and lively report.

As to when there will be a cure I often wonder what ‘a cure’ means. Do we have a cure for cancer yet? I don’t think so but we have treatments that will put some cancers in remission for many years. Perhaps this is what a ‘cure’ for Parkinsons will be, halting the disease and maybe even repairing damage done, but will it be a lifelong cure? Probably not, more like being in remission that will need monitored for any changes over the years. I wonder what others are thinking when they talk of ‘a cure’.

Yes wouldn’t it be great maryowen if there was a Eureka moment, the breakthrough that will bring the cure. But doesn’t that assume PD is one condition? I don’t think it is. Meantime I continue to live life day by day with the hope that better treatments will improve my quality of life over the years ahead. That is my dream for the future.

#12
I couldn't agree more Margaret ~ it’s important to give oneself direction, it gives us strength and determination. I appreciate all the hard work that goes into fund raising for research that brings us closer to something that will not necessarily cure this disease but control it and stop it progressing. I can live with that! That gives me direction!!!