Sunday, 24 January 2016

CrowdSpeak: thank you

Crowdfunding success: 20 days and 242 donations later we got there. Thank You! #CrowdSpeak #CrowdacureMS #MSBlog

"I was with my family watching 'The Revenant' this afternoon when I got a text from Sagit Weiss, the Crowdacure founder, to say we had done it; we had reached our funding target. All I can say is thank you, thank you, thank you."


click here
"I had major reservations about using crowdfunding to fund medical research. Would it be successful? What would the wider MS community say? After your recommended getting the ARTEMIS trial off the ground with crowdfunding we decided to give it a go. The ground rules that Crowdacure apply make sense. The research has to be hard to fund and peer-reviewed by an independent panel. We the researchers had to commit to engage with the campaign. So after 20 days and 242 donations later we reached our target. This will allow us to start the project tomorrow; we will keep you updated."

"As will all successes and failures it is a time to reflect. Somehow enabling Charcot Project 2 with crowdfunding gives it some legitimacy; at least in the eyes of our readers (minus a few trolls). I sincerely hope we can take the rest of the MS community along with us."

"In this week's BMJ (British Medical Journal) there is a quote from Geraldine Strathdee Geraldine a consultant psychiatrist in the NHS and national clinical director for mental health at NHS England. She says something that is as relevant to mental health as it is to MS and helps put the Charcot Project in context."

BMJ Confidential: Geraldine Strathdee: Cooking on gas. BMJ 2016;352:h7017

Excerpt:

..... "There’s an enormous amount spent on mental health - the only problem is, it’s spent on dealing with the adverse consequences of not having given access early to effective interventions or having a proper prevention programme," she told a King’s Fund conference in 2015. She believes that people can be coached into becoming literate about their own mental health and that early intervention will improve self management and avoid lifelong bad outcomes for many.....

Paraphrasing:

"There’s an enormous amount spent on multiple sclerosis - the only problem is, it’s spent on dealing with the adverse consequences of not having given access early to effective interventions or having a proper prevention programme. I believe that people can be coached into becoming literate about multiple sclerosis and that early intervention will improve self management and avoid lifelong bad outcomes for many pwMS."

"Hopefully the Charcot Project will help catalyse an MS prevention programme."

CoI: Team G will be recipients of a grant from Crowdacure to perform this research

29 comments:

  1. Great news and so positive!! Looking froward to seeing progress of the project. Also, the Gerladin S observation as applied to MS is very apt. Thanks for posting

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  2. Please do a Crowdacure for Cladribine! Getting it licensed in the UK will have a knock on effect worldwide and promote its off label indication globally !

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    1. Thanks DXB, we've been considering this or, alternatively, setting up a charity to support off-label treatment for pwMS. What do you think? And if you are positive, what should we call the charity?

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    2. How would a charity work for off label prescribing? Would it be providing funds for patient's to pay for of label drugs? How much is cladribine off label?

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    3. Such as the name and "CladMS for all", or rather "CladMS"...

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    4. I think starting a charity is a reasonable idea, but not to pay for cladribine. Any money raised should be used to support your MS research projects. Your own charity could bypass the inefficiencies of say the MS Society that spends a large proportion of its money on administration.

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    5. The MS Society does not spend a large proportion of its money on administration!

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    6. What I don't understand is why the MS bus takes patient's to their GP appointments. In London there is Dial a ride for local journeys and appointments. How much money raised locally is going to research? I certainly would rather five my money directly to projects.

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  3. The research is important. If EBV has a relationship to MS which evidence suggests working to prove this is an imperative. If there is no correlation this too is important to find out. All pieces in the puzzle lead to a picture.

    What the crowd funding does show is that people with MS, caregivers and more will engage supporting initiatives when they are informed about initiatives in terms they understand. It shows they want to be included which we were already aware of. The MS patient/caregiver community is truly remarkable in that they are bound to one another globally in very very special ways that go far beyond the commonality of the disease. They are bound together through caring, compassion. kindness and love.

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  4. Congratulations to Team G for the initiative and I am very happy that we have given credit to Charcot 2 because the issue EBV and MS need to unite time be resolved, and somebody has to do it.

    And very interesting comment made by Geraldine Strathdee.
    I think even that the management of mental health in MS starts already by the DMT of choice for treatment of disease, the more efficient it is greater the chance of keeping this brain "intact" or stable.

    So I think in the near future there will be no room for CRABS...

    And I hope the MS community take a real opportunity to Cladribine for her to show its activity against MS...

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    1. Thanks Cinara, we've been considering this or, alternatively, setting up a charity to support off-label prescribing for pwMS. What do you think? What should the charity be called?

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    2. DRK I think the wonderful idea!!! I entirely support!!!
      I sent last week an email to two major associations of support for people with MS here in Brazil(ABEM - Brazilian Association of Multiple Sclerosis - and AME - Friends Multiple for Sclerosis) on treatment with Cladribine, to see if we could the support them, but so far there was no answer.
      I sent emails with the studies, the foundations, the reasons to support the Cladribine Generic Injectable as effective and safe treatment of MS.
      I entirely support this project DRK !!!
      A CrowdFounding is an excellent alternative!!!!

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    3. As for the name could perhaps be "CladMS for all" or rather "CladMS"...

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  5. Congratulations to the team and all the backers who made sure this research will happen.
    We don't want to see anymore important research not happening.
    Congratulations also for pioneering this, we hope that crowdfunding this way will not only make an impact by funding but also by positioning the community as a decision-maker at the same level as government bodies and others. We are doing our best to offer a solid platform to achieve this objective.

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    1. thanks Sagit. glad you left teva to take this on

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  6. Laudable aim - to treat MS early. But are 85% of brain lesions not clinically silent? Are some people only suspected of having had MS activity postmortem, never having had symptoms during life? Was it sheer luck that the disease did not accelerate at some point for some reason(s)?

    I hope you do not lose sight of the hope of treating those people for whom the beginning of the MS journey was not noticeable for many years.

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    1. excellent question - "Was it sheer luck that the disease did not accelerate at some point for some reason(s)? "

      Is there an in-between state between having and not having MS?

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    2. "is there an in-between state between having and not having MS?"

      True benign MS perhaps. Or maybe some white matter changes in the brain at this stage but not fully formed MS lesions.

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    3. The time between the first and the second lesion once you have those in time and space a diagnosis may be made

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    4. MD what about those who have a high lesion load on first MRI scan and the lesions are a typical MS shape. Surely that suggests MS rather than an other type of demyelinating disease? I understand by space you mean location.

      Do lesions normally show just one at a time?

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  7. "The time between the first and the second lesion once you have those in time and space a diagnosis may be made"

    But if these lesions are clinically silent by pure luck, the patient may go on for years with no clue they have the beginnings of MS? I suspect this was the case with me - until I got a massive spinal lesion. Only then did the MS came to the fore. The brain may compensate for a lot of damage for many years, but there is nothing that the CNS can do for spinal damage.

    And I have heard that scuba divers can also acquire little symptomless holes in the brain over years. Symptoms alone can surely never be a reliable early warning sign for MS!

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  8. Good news and great achievement team G. It seems that you set a precedent with this initiative. Long-life to crowdfunding research! (pharma being the closest thing to pure devil on earth).

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    1. On that note, you may be interested in this article today on the subject of pharma.
      http://www.theguardian.com/society/2016/jan/26/big-pharmas-worst-nightmare

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    2. This is another good one that is pertinent to some who visit here.
      http://www.theguardian.com/higher-education-network/2016/jan/26/why-people-fall-for-pseudoscience-and-how-academics-can-fight-back#comment-67509324

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  9. It must be getting close to results time for this - are there any updates that can be shared? It's all gone quiet...

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    1. Yes - I agree. Sometimes it's hard to know where to look. We need some hope that this work could result in effective treatment.

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  10. BioRxiv and F1000 research are good tools to make research available as it occurs.

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