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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 11-01-15, 02:02 AM   #1
Allan
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Default Another Cautionary Tale About Breakthrough Cures

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Hi everyone

I've been back a long way but can't find any further mention of this - and that's a good thing. This is another of those cautionary tales:

Three years ago an article appeared in Science Daily titled: Huntington disease breakthrough: New potential therapy that restores motor function being planned for clinical trial.
Medical researchers at the University of Alberta in Canada discovered a promising new therapy for Huntington’s disease that “restores lost motor skills and may delay or stop the progression of the disease”, said researcher Simonetta Sipione.

The therapy is based on lab model tests and, because it uses a molecule already in clinical trials for other diseases, it could be used in a trial for Huntington disease within the next two years.

"We didn't expect to see such dramatic changes after administering this therapy," says Sipione, the principal investigator. "We expected to see improvement, but not complete restoration of motor skills. When we saw this, we were jumping with excitement in the lab. This is very promising and should give hope to those with Huntington disease. It's a treatment that deserves to go to clinical trials because it could have huge potential."

That headline was made because of the contents of this article: Ganglioside GM1 induces phosphorylation of mutant huntingtin and restores normal motor behavior in Huntington disease mice. There doesn’t seem to be any more recent comment except this:

The Canadian Huntington’s Society declared: We have seen incredible breakthroughs in HD research over the last 2 years. Dr. Simonetta Sipione was able to reverse physical HD symptoms in a mouse.

So don’t necessary believe “wild statements” or "false hopes" about cures being “just around the corner” or “on the horizon”.

See: www.huntingtonsociety.ca/what-is-the-future-and-past-of-hd-research

In the meantime, we need to find non-medical ways around this god-awful disease. Ways that help us Care, Cope, make Decisions and find Solutions in better educated ways. One way looks like being Jaq’s second venture into Collective Oral or Narrative History - storytelling and collecting.

For those of you who have seen Skywalker’s Action thread this is the storytelling link:
www.hdsa.org/mach/voices-behind-huntington-s.html

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Old 11-01-15, 11:25 AM   #2
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Default Re: Another Cautionary Tale About Breakthrough Cures

Good points as ever Allan

There's a HD Buzz article called Ten golden rules for reading a scientific news story which gives a health warning LINKY HERE
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Old 11-01-15, 01:29 PM   #3
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Good points as ever Allan

There's a HD Buzz article called Ten golden rules for reading a scientific news story which gives a health warning LINKY HERE

Hi Trish

I'm not too big a fan of HDBuzz because, although it "simplifies" the medical research, many of the changed reports tend to be along the lines of sketches by The Two Ronnies with their embedded humour.

Apart from your link, the majority of the reports seem to be exactly what Ten golden rules for reading a scientific news story suggests we try to avoid, the exception being: Huntington's disease clinical trial announcement: huntingtin-lowering drug to enter Phase I trial in 2015.

The sub-title, however, does get emotive by using the word "exciting":

A clinical trial for an exciting therapy against HD is planned for 2015. The first step is to make sure it is safe.

In terms of medical research it is "just around the corner" but to the people who need the benefits of all this excellent research - it is still a million miles away.

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Old 12-01-15, 02:42 AM   #4
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi All

I have not posted much of late but check in at least once a day. The reason? I feel I have nothing constructive to say - nothing that will change what anyone on here is actually going through. So that is why I am posting now. To simply demonstrate what all these claims of breakthroughs are - of no use whatsoever to anyone on here right now. All they do, at the most, is give us hope/comfort that sometime in the future...like godzillion lightyears away. But, at least they are trying so we should be thankful for that, for future generations. But for us, sorry, it is just pie in the sky.

Hope I do not cause offence, shatter any dreams or burst any bubbles, but....dream on. It is 1.30am and that is what I intend to do.
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Old 20-04-15, 09:32 PM   #5
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Hi All

I have not posted much of late but check in at least once a day. The reason? I feel I have nothing constructive to say - nothing that will change what anyone on here is actually going through. So that is why I am posting now. To simply demonstrate what all these claims of breakthroughs are - of no use whatsoever to anyone on here right now. All they do, at the most, is give us hope/comfort that sometime in the future...like godzillion lightyears away. But, at least they are trying so we should be thankful for that, for future generations. But for us, sorry, it is just pie in the sky.

Hope I do not cause offence, shatter any dreams or burst any bubbles, but....dream on. It is 1.30am and that is what I intend to do.
really appreciate your view i think if there was at least more understanding and knowledge of this disease with social services and some doctors at least all those effected by it could at least have better lives. As you say not much hope for us but maybe for those to come will we see. My husband's so called doctor was next to useless with any knowledge was looking it up on google quite incrediable! I hope that new book that has come out inside the o'briens at least raises awareness and gets people talking about hd and maybe some
of the so called pros should read it.
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Old 13-05-15, 12:29 PM   #6
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Default Re: Another Cautionary Tale About Breakthrough Cures

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Once again I don't want to start a new thread so I'll bung this "Study News" here.

STUDY TO INVESTIGATE A POTENTIAL THERAPY AT CELLULAR LEVEL FOR HUNTINGTON'S DISEASE

Plymouth University wins major grant to help find treatment for Huntington's disease

Plymouth University receives £520,000 grant

Defining the role of the Bcl-2 family proteins in Huntington’s disease

This last scientific paper is a couple of years old and includes this statement as its final sentence:

Finally, future studies involving innovative human cellular models such as iPS from patients with HD, will clarify whether Bcl-2 family proteins, already molecular targets in cancer therapy, may also be a therapeutic target for HD.

They are still cutting meeces to pieces, though, so the reality is another 10 - 20 years ......

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Old 18-05-15, 11:44 PM   #7
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Default Drug Discovery and Development: A LONG, RISKY ROAD

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After several people recently mentioning research, tests and cures just around the corner I thought it might be worth mentioning these recent publications:

Biopharmaceutical Research Companies Are Developing More Than 100 Medicines to Treat Mental and Addictive Disorders - page 28 is the page to read: The Drug Development and Approval Process

Therapies in Pipeline

HD Research

There don't seem to be any cures in the pipeline – but therapies, yes.

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Old 19-05-15, 12:39 AM   #8
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi Professor Allan!!

I have just read through page 28 and the other articles and, yeah, I agree with you that a "cure" is decades away. I think the best we can hope for is some kind of a drug that suppresses the destruction of the brain cells and stops the faulty gene kicking in. I keep reading it is all to do with proteins. Damage limitation, that is all anyone in the here and now can hope for. Sadly.
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Old 20-05-15, 07:32 PM   #9
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi

I think for new people arriving here it is good that there is some hope on the horizon.

There wasn't very much hope when I tested. Coming to terms with it was a very very black time. Part of the reason to test was because neither of my children wanted to have children.

It would have been great if there had been something to save my mum but they were not far enough ahead. It's very hard to have no hope for your child.

I have no pension provision because I have taken a calculated view that the timeframe for a cure is outside my lifetime but if they get one, I'll write my story and find someone stunning to play us in the film ! The hope for a cure is not irresponsible because it is what is talked about at HD support groups.

And HD buzz is jointly edited by someone standing with the HD gun to his head

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Old 20-05-15, 10:26 PM   #10
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Default Re: Another Cautionary Tale About Breakthrough Cures

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The HDSA have a free app which allows all you iPhone, iPad and tablet users to keep up-to-date with the Research and News.

I think it's available via the iTunes store and google play .....

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