Forward in 2012


#1
I practically live now for a possible breakthrough in the treatment of PD: we have waited for too long!
Please, please, Parkinson UK, do not be timid, be bold in 2012.

Also, allow older patients to have breaking ground trials: too often, they are banned from them. What do they have to loose when they do not have a proper life already?

Please help us more and quicker! my life is on hold and so are the lives of thousand of people all over, carers and patients! We are full of hope, do not
crush it. I cannot accept and never will accept the present situation for it is too horrible to bear! so, I am suffering a lot!

#2
Totally understand your position Natasha. Folk have been waiting for a long while for a breakthrough. The one trial I am hopeful of is Cogane for which the Stage 2 results should be announced if not 2012 - early 2013. The company who have developed Cogane: Phytopharm recently stated that they are on track to complete patient recruitment by spring 2012 which is good news. Their latest announcment and results are here in a PDF :http://www.phytopharm.co.uk/images/stories/Prelims_FY_2011_Final.pdf

#3
I couldn't agree more ..
For the person who has the dreadful illnes , or the family / carer / supporter it is such a difficult illness , heart breaking , we are all living in hope because it is the only thing we can do ..

#4
Thank you Summerskye & Johnie for your answers. I can see now I am not the only one to think the way I think: it is a great comfort to me.

Take care.

Natasha

#5
Johnnie, forgive me for misspelling your name!

#6
Hi Summerskye,

I just checked the website you gave me: "phytopharm": how exiting, hopeful and interesting! thank you so very much for mentioning it! God bless!

Natasha

#7
As the husband of a newly diagnosed sufferer my heart goes out to you Natasha. My wife's neurologist said he wags optimistic of a breakthrough within 5 years. Pray it is far quicker than that

#8
Hi Davech,

Welcome to the Forum!

Look at the post put in by "Summerskye" on 27 December re: research.

All the best
Natasha

#9
Cogane - Phytopharm

If you have been dx within the last 2 years, and have not yet taken any PD meds you may be eligible to join the trial.

The more volunteers they get, the faster the trial will complete.

I am currently on week 11 of the trial

#10
Happy New Year everyone!
There is much in the pipeline to be hopeful about.
Cogane for those in the early stages looks promising and there's IPXO66 for those in later stages.In the final stages of trials I believe and also promising!
http://www.medicalnewstoday.com/releases/219176.php
Here's to 2012!
Love GG

#11
Thank you Krugen68 and Goldengirl for the info!
Better 2012 to all!

Natasha

#12
krugen - are you allowed to say how it is going?

I'm not an accountant but a £7m loss with £18m assets and no income, sounds like they need to get a move on or they will run out of money!

personally i am quite hopeful for new treatments in the next 5 (its always 5!) or so years following on from the better understanding of how cells are damaged - the more that is known of the chain of events the more opportunities there are of breaking the chain. the very interesting part is that much of this research is across a whole group of diseases including alzheimers and huntingdons so we can benefit from resources used for those diseases and vice versa.

#13
Cogane Trial

Well I have had no adverse side effects so far, and [u]think[/u] there are some improvements ( but I still might be only on the placebo ! ) I would settle for it simply slowing/halting the progession :grin:

My neuro at my last 6 month visit (when I informed him I was on the trial)hadn't even heard of it(I had to spell it for him to google), no wonder there's a shortage of volunteers ! There's an indecent rush by your '10 minute' Neuro, to place newbies on the same old meds.

Phytopharm raised sufficient cash to get through the Stage 2 trial at their current 'burn rate' ( I [u]am[/u] an accountant :grin:) If it is proved to work they will have no problem finding partners for stage 3.

Whilst the current trial is for early PD, lab tests apparently indicate that it will assist those on existing meds

Fingers and toes crossed !

#14
always good to get a professional opinion! if it proves successful they will on the way to riches and good on them - but if the next stage is inconclusive? anyway - hope you are not on the placebo and its doing you good.

#15
how long do u no if ur at end stages ,or do u go with the flow how ur body react to drugs etc?:confused:

#16
hi Ali
i don't think any treatment is ok for every person at every stage. but some of the new treatments will be quite different from the old ones so people who had problems with the old ones might be luckier next time, you never can tell.
t

#17
Hello everyone

Thank you all for sharing your thoughts and experiences. We share your sense of urgency and will be working hard in 2012 to bring us closer to new and better treatments, and to help more people living with Parkinson's get involved in research.

There are lots of reasons to feel optimistic - see our recent round-up of our progress in 2011:

http://www.parkinsons.org.uk/about_us/news/news_items/all_news/parkinsons_research_in_2011.aspx

And we're hoping for major breakthroughs in 2012. You can keep up to date with all the latest international research through research news:

http://www.parkinsons.org.uk/research/research-news.aspx

And remember to keep an eye on our research studies page for opportunities to take part in research studies:

http://www.parkinsons.org.uk/research/get_involved_in_our_research/take_part_in_research/list_of_uk_research_studies.aspx

If you'd like to be kept updated with opportunities to support research, join our Research Support Network by emailing RSN @parkinsons.org.uk.

Wishing you all a happy new year,

#18
Thank you and God bless, Parkinson's UK Research!

Natasha