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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 19-06-15, 06:37 AM   #21
Joseharry
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Default Re: Read This ..... and Take Action!

Hi Allen,
I have sent you an email with the specifics of the trial.
We are waiting to hear from Ed who is consulting the medical monitors re Rogers claustrophobia and if he would be allowed diazepam...we are really hoping he can participate.
Brenda
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Old 23-06-15, 10:33 AM   #22
Allan
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Default Fact and\or Fiction ……

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Factsheets [plus instructions from GP’s and others] for all diseases, disabilities, etc. seem to assume that all “patients”, “clients”, will be compliant, submissive, agreeable, amenable or accommodating – this is not necessarily so, in the first instance, with hd-family members.

Defiant, rebellious, self-centred, negative and resistant to change - or any unknown feature or development - is the way I have experienced it with S and in viewing many messages here. Apologies to LECS, Dolphin and others …..

Now for some basic biochemistry: “New Trophy for Actors

Fact: HD causes the death of neurons [nerve cells].

Growth features such as neurotrophins that promote the survival of neurons [nerve cells] are known as neurotrophic factors.

Brain-derived neurotrophic factor [BDNF] is a neurotrophic factor found originally in the brain, but also found in the periphery. It’s a protein that activates certain neurons of the central nervous system and the peripheral nervous system; it helps to support the survival of existing neurons, and encourage the growth and diversity of new neurons and synapses. In the brain, it’s active in the areas vital to learning, memory, and higher thinking.

BDNF is one of the most active substances to stimulate neurogenesis – “the rebirth of the brain”.

Despite its name, BDNF is actually found in a range of tissue and cell types, not just the brain. It can be seen in the retina, the Central Nervous System, motor neurons, the kidneys, and the prostate.

Exercise has been shown to increase the amount of BDNF and therefore serve as a vehicle for neuroplasticity - the brain's ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons [nerve cells] in the brain to compensate for disease and to adjust their activities in response to new situations or to changes in their environment.

So, that’s why getting “on yer bike” and keeping fit with daily exercise will help the hd-person to maintain a more stable, independent lifestyle.

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Old 23-06-15, 10:45 AM   #23
Allan
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Default Clinical Trials …. Current, Recent and Completed

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Several people, both here and on facebook, have mentioned Clinical Trials recently. The links here show what’s happening and where – past, current and future.

The Clinical Trials website indicates at least 112 Clinical Trials at various stages: Not yet recruiting; Recruiting; Active, not recruiting; Completed; Terminated; Unknown; Withdrawn.

Although several are currently recruiting they may not be in the UK. They all have criteria for inclusion and exclusion and the website allows you to search for trials in your region.

Active Biotech’s partner Teva initiates a laquinimod clinical trial in Huntington’s disease

Teva and Active Biotech Announce Expansion of Laquinimod Clinical Development Program with New Trial in Primary Progressive Multiple Sclerosis and First Patient Screened in Huntington’s Disease Trial

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Old 27-06-15, 07:03 AM   #24
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Default Re: Another Cautionary Tale About Breakthrough Cures

Wishing Roger well, Brenda, although to be honest reading the insert from Allan I don't really understand it. I am sure it is a valid reason to be doing the trial, and will give understanding in this dreadful disease.
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Old 01-07-15, 12:04 PM   #25
Allan
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Default Research, News and a Conference ......

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Hi everyone

For those of you who don’t have access to the EHDN News here is the latest edition: www.euro-hd.net/html/disease/archive/ehdn-newsletter-jul2015.pdf

There are some very interesting items plus links to websites such as: www.hdinhd.org + www.hdinhd.org/about-hdinhd

Also, the European Huntington Association Conference [September in Warsaw] could be an interesting weekend. Scroll through the Programme and Speakers photos ..... and see who you can spot.

Several months ago someone was asking about this year’s HD World Congress – well there isn’t one [see just under the Golden Tulip Hotel]

I also think that the content of this link highlights many of the issues and problems we all face along with our hd-family members in the longer term.

Right then, shades, towel, water, suntan lotion, book, music - here I come, beach! Mad dogs and Englishmen go .....

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Old 02-07-15, 08:13 AM   #26
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi Allan

It's official then...you're not just a nutty Professor, you are bonkers....you forgot to take your hat Like, doh - you're asking for trouble!!

Been looking through your documents and as always am amazed at what you find and so generously share. The Majorie home initiative being rolled out in Flanders seems marvellous - for those without severe psychiatric symptoms at least - but they are trying to provide specialist care facilities.

The global-chart showing the plethora of literature regards hd just brings me back to head scratching - if this is soo rare as we are constantly told then how comes so many people have been writing about it for so long.com

Oh, and I spotted Heather and Cath from HDA...so which one are you...the rather suave and dishy Professor Michael?
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Old 08-07-15, 09:26 AM   #27
Joseharry
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Default Re Clinical Trial

Hello Everybody,
Roger and I attended Queen Sq yesterday for the screening prior to admission to the Laquinimod clinical trial.
Laquinimod was developed for treatment of MS patients. It was not as far as I am aware successful.
However the Boffins believe it could help to "calm down" the overactive immune system in the brains of HD patients that Currently kill off too many " good" brain cells.
The idea is that by controlling these "thug Policemen "( thats how Dr Ed Wild described them to us!) Laquinimod could slow down the progression of the HD.
Fingers crossed.
It was a very busy day yesterday with
loads and loads of tests.....blood pressure, height ,weight, memory tests, balance tests, cognitive tests, an ECG and about a gallon of blood including an HIV test!
Poor Rog!
Next time we go will be for the MRI scan ....awaiting date for that probably some time next week when plans are afoot to heavily sedate Rog......just hope he can cope with it then....after that if all goes to plan he will start on the medication....(25% of which will be a placebo rather than the real drug as is standard in these trials)

Just hope some good comes from it
Brenda x
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Old 08-07-15, 11:21 PM   #28
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Default Re: Another Cautionary Tale About Breakthrough Cures

Good luck with trials.


Martin was sedated when they did his scan, he would not have kept still long enough, in fact he was anaesthetised.

Take care xxx
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Old 09-07-15, 10:06 AM   #29
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Default Re: Another Cautionary Tale About Breakthrough Cures

Hi JoseHarry

Ah..Good Cop/Bad Cop - that was a belter of a TV drama... As with any drug you need "guinea pigs" who are willing to take part in trials and I guess Roger is thinking he has nothing to lose but possibly something to gain. So good luck to him and wouldn't it be lovely if he actually responds well to the drug? It is a brave thing to do nonetheless. And one that may lead to helping others. That's an amazing thought.
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Old 22-07-15, 12:16 PM   #30
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Default Who is the financial “terrorist”? Who pockets the profits? $$$ £££ €€€ .....

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Hi everyone

Who is the financial “terrorist”? Who pockets the profits? When and where does the hd-person fit in all of this?

This financial statement\comment is currently being flaunted around the Global Business Media:

Isis Pharmaceuticals Initiates Clinical Study of ISIS-HTT Rx in Patients With Huntington's Disease:
First therapy designed to directly target the cause of disease
Isis Earns $22 Million Milestone Payment from Roche


This is the final paragraph. I have split it and highlighted two items :

ISIS PHARMACEUTICALS' FORWARD-LOOKING STATEMENT

This press release includes forward-looking statements regarding Isis' alliance with Roche, the development, activity, therapeutic potential, commercial potential and safety of ISIS-HTTRx.

Any statement describing Isis' goals, expectations, financial or other projections, intentions or beliefs is a forward-looking statement and should be considered an at-risk statement. Such statements are subject to certain risks and uncertainties, particularly those inherent in the process of discovering, developing and commercializing drugs that are safe and effective for use as human therapeutics, and in the endeavour of building a business around such drugs.

Isis' forward-looking statements also involve assumptions that, if they never materialize or prove correct, could cause its results to differ materially from those expressed or implied by such forward-looking statements. Although Isis' forward-looking statements reflect the good faith judgment of its management, these statements are based only on facts and factors currently known by Isis.

As a result, you are cautioned not to rely on these forward-looking statements. These and other risks concerning Isis' programs are described in additional detail in Isis' annual report on Form 10-K for the year ended December 31, 2014, and its most recent quarterly report on Form 10-Q, which are on file with the SEC.

I assume that these are financial risks and statements that we are cautioned not to rely on. So, I suppose we all have to hope that they make their millions of dollars and that prophets rise!

Oh yes, I almost forgot to ask. When and where does the hd-person fit in all of these millions of dollars? Globally, there are 38 people currently in this Phase 2 trial. So, that’s the only hope we have for our hd-people – I think.

$$$ £££ €€€ ......
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