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Research, drugs, treatment, new diagnosis Forum for medical issues, and for the recently diagnosed (and families)

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Old 21-05-15, 11:46 PM   #11
Allan
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Default Re: Another Cautionary Tale About Breakthrough Cures

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It's 8 years old - but it still tells and interesting story ...........

BIOMEDICAL PHILANTHROPY- The Money Tree

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Old 22-05-15, 09:24 AM   #12
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Default Re: Another Cautionary Tale About Breakthrough Cures

Houston we have a problem....

I've tried to access the document but it is coming up web page no longer available? Might you be so kind as to...do it again, please? Ta very much like
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Old 22-05-15, 12:41 PM   #13
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Houston we have a problem....

I've tried to access the document but it is coming up web page no longer available? Might you be so kind as to...do it again, please? Ta very much like

Hi Dave ……..

Unfortunately, it seems as though the requested item has gone walkabout and is now lost in cyberspace – never to return. I have tried every-which-way to reconnect it to the international space station but it seems that the package has [coincidentally] been removed from orbit.

Fortunately, I downloaded and saved a copy when I accessed the NATURE cybersite – so I have it safely locked away in my ......

What I'm getting at here is that if multi-national corporations and governments can use billions of £££ $$$ €€€ to finance this - why, on Earth, can't they support research into Cures for Neurodegenerative diseases?

As it’s Friday I think I’ll let you drift off through the Milky Way and into that infamous black hole of Grappo Insensitus - known locally as vino cerebellum plonk ……

I’ll just have to leave you with a little light reading for the long weekend.

This is Houston logging off, Dave. Sweet dreams.

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Old 24-05-15, 06:34 PM   #14
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi Ground Control

I have been absent for a few days, been trawling through bits and bobs included in your little light reading link whilst partaking of the joy of wine, as instructed by your goodself. Great combo!! Then of course there was the EuroVision to contend with - got through it with "rose" tinted eyes

I am working on behalf of a lovely lady - if you click onto HD Poems in the Sarah's List then, lo and behold, there are two of dear Trish's poems from Curse in Verse - her fame has gone global. And I am aiding and abetting her by giving her a book plug right here, right now. I consider it a pleasurable duty
Check out the site guys......and gals........
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Old 28-05-15, 05:38 PM   #15
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Default Re: Another Film\Movie About Breakthrough Cures

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So, there I was doing my weekly chores and it was time to get the iron out. I don’t usually watch any daytime TV but because I was a bit down in the dumps I flicked though the channels and came across a Harrison Ford film – this’ll do I thought: Extraordinary Measures.

This describes why I watched it – and the ironing is still piled up!

'Extraordinary Measures' gets some parts of the true Pompe disease story right and it depicts in 100 minutes or so, what in reality takes years and years to come to the treatment stage.

If you get the opportunity it’s well worth viewing. It is, of course, a typical American “heartstrings” movie: clinical research, pharmaceutical companies, corporate financing, frustration, personalities – and families.

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Old 29-05-15, 10:03 AM   #16
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi Allan

Typical man - doing whatever to get out of the ironing!! Sat there with your tootsies up, a lager in one hand and a tub of popcorn balanced on your lap eh? Afternoon delight....Tut Tut

Reminds me of another film about the struggle to find a cure and make someone listen: Lorenzo's Oil. That is a real tear-jerker showing the determination parents have to help/cure their children, the limitless love and commitment they have.
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Old 04-06-15, 11:49 AM   #17
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Default Love is the Drug - or a game of Charades

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Is it a book? Is it a film? Is it a therapy? Is it a cure?

Can we cure Huntington's disease?

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Old 18-06-15, 10:40 AM   #18
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Default Read This ..... and Take Action!

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Hi everyone

I feel obliged to copy this loud statement by JP from facebook to our message board. It obviously has an American bias but Jimmy is, as always, communicating with a global audience:

Jimmy Pollard

"I hope they find a cure for Huntington's Disease." Who's "they?" "They" will never find a cure...an effective treatment...a therapy...or incremental advances that increasingly push back onset. I suspect you'd take any one of them. But "they" have no chance.

But WE will. Together WE do.

Clinical trials are funded. Now. Today. They have sponsors, pharmaceutical companies, spending many millions of dollars. Several of them. No drug for any condition comes to market without a pharmaceutical company and now they're everywhere, sponsoring nearly every event in this community. Fifteen years ago there wasn't a single one to be seen...anywhere with anything to do with HD.

The trials are in humans. Not mice. Not fruit flies. In people. They're recruiting volunteer subjects. Now. You may not hear it loudly from sponsors or clinic site staff for lots of reasons but there is some difficulty in filling these studies. Who'da thunk? Jeezus, the Grateful Dead sold 210,000 tickets to their farewell shows in an hour!

Volunteering to participate in research is an individual and personal choice or decision. Not everybody can. They have their hands full with HD or even other aspects of life simply get in the way. I know we all recognize, understand and respect that. But if WE are gonna cure HD, we need everybody as engaged as they can be.

Some folks say they're holding back for more promising studies. Some folks want to pick studies with less of a chance of getting a placebo. Some folks have felt they weren't valued by clinic staff or had problems of one kind of another. Some folks didn't meet the inclusionary and/or exclusionary criteria of a study or two in the past and say, "Hey, I tried and they didn't want me," feeling slighted or even rejected. All kinds of reasons. But all studies, every one of them, contribute to the accumulation of knowledge that will effect a cure...successful or not. We need you all now. Please see this "big picture" and consider reconsidering.

WE will cure it with many thousands of volunteers, not just hundreds. That's why everyone is important. The "WE" is the collection, the team of those thousands. You count. Without you, "they' haven't a chance...ever. But "WE," well we're moving right along these days, in partnership with our docs and scientists.

This whole scientific process creeps along, never fast enough as we say goodbye to loved ones year after year. But a fact remains: recruiting delays slow it even further. Hell, if we just removed those delays with a steady flow of willing participants, it would expedite the arrival of that cure. Maybe not those who are walking their HD roads today, perhaps not even their children but their grandkids... hey, we're getting there. But it will never end without lots and lots of folks saying, "I'm in!" today.

Now is the time. Again, NOW is the time. If you can, please consider volunteering. As you decide please see this "big picture." Please understand deeply that THEY will never cure it but YOU and many, many more YOUs will.

I feel awkward addressing this topic because neither I nor my own family is directly touched by HD. Forgive me if you think I'm presumptuous. Next June I will have been gifted to be part of this community for 30 years. that longevity, even as a professional, has given me a perspective that sees how critical this moment in time is to curing the damn thing.

I've also come to see first hand how hard hundreds of people work on projects of all kinds to raise funds and increase awareness, walking, shooting hoops, pies in your faces and all the other crazy stuff you do to get another buck for the cause. Keep at it; don't stop. But I think our collective attention needs to focus for a minute and consider the singular importance in multiplying the numbers of folks who've already volunteered and completed studies only to sign up for another. We need everybody as fully engaged as they can be. Because the time is now.

Yep, the time is now.

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Old 18-06-15, 07:47 PM   #19
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Default Re: Read This ..... and Take Action!

Hi All,
Roger and I have been to see Dr Ed Wilde At Queen Square today...and have been invited to take part in clinical trials for Laquinimod....
We are delighted.
Just hope that Roger can cope with the necessary MRI scans.
He was unable to tolerate being in the tube when required to have one last year.
We have discussed sedation ( diazepam) which may be an option ....we really hope Roger is able to take part.
Exciting times.

Brenda
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Old 18-06-15, 10:37 PM   #20
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Default Re: Read This ..... and Take Action!

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Hi All,
Roger and I have been to see Dr Ed Wilde At Queen Square today...and have been invited to take part in clinical trials for Laquinimod....Brenda

Hi Brenda

I’ve had to do a quick search to find out what Laquinimod trials are all about. This is it [or is this it?] - apparently:

Targets for Future Clinical Trials in Huntington’s Disease: What’s in the Pipeline?

Hyperactivity of the innate immune system, both centrally and peripherally, as a result of the cellautonomous effects of mHTT in monocytes and microglia, and mediated by the nuclear factor kappa B (NFjB) pathway, is now an established pathogenic pathway in HD. Whether immunomodulation by any of the wide array of agents available is capable of preventing or reversing this detectable phenotype, and whether this will prove beneficial in patients, remains to be seen. Although its precise mechanism of action is unknown, the immunomodulator laquinimod reduces (NFjB) activation in astrocytes and may restore BDNF levels.

Laquinimod also may act in part through the MAPK signalling pathway, reducing the phosphorylation of p38 and JNK, linking this compound to the cell signalling pathways discussed previously. Having demonstrated potential in multiple sclerosis, laquinimod’s effects on tractable dysfunctions in HD are under investigation, and clinical trials in HD are planned.

Easy peasy then Brenda. Seriously, though, is it to do with Seizures as Hyperactivity and Excitotoxicity are mentioned on page 7 of Ed’n’Sarah’s paper?

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