Tuesday, 30 May 2017

World MS Day tomorrow. Introducing #BartsMS-Charity TODAY

I trust most of you are aware tomorrow is:
including this event:



On this occasion we decided to announce a project we've been pondering over for some time. 

It is:

Don't worry the logo will look much nicer once our design department are ready:-)
What is the objective of BartsMS Charity?

To enable Barts-MS to undertake hard-to-fund, or to prime important, MS research projects.

Our first key objective is to enable every person with MS access to effective disease modifying therapies (DMT), regardless of their disability and their economic background.
Evidence suggests that DMT:
(i)          Should be started as early as possible, irrespective of the economic setting within which people live
(ii)         Is effective in many pwMS even at a more advanced stage of their disease
Many pwMS now have access to effective DMT. However, two important groups are excluded:
(i)          pwMS with a high level of disability, for example, wheelchair users
(ii)         pwMS at any stage of their disease who are typically living in lower and middle income countries (LMIC) or have poor access to DMT because they are not covered by healthcare insurance. 

Do we need yet another MS charity?
Both in resource-restricted health care settings, and from a certain level of disability onwards, where cost-effectiveness guidelines lead to limited access, the cost of DMT represents a significant hurdle for access.
The use of ‘off-label’ drugs has the potential to enable significant change to the problem of access, however doctors are often either not aware of these drugs or they may be concerned about their use in strongly guideline-driven healthcare environments.
Some doctors are also concerned about the evidence base and their personal risk of litigation in case of adverse events.
Funds to support proof-of-concept studies as well as larger clinical trials are limited as off-label DMT candidates are generic drugs, i.e. off-patent, with only minor - if any - incentives for drug companies to engage.
Several MS charities provide a different proposition, however do not specifically address the need to focus on the clinical advancement and availability of DMT for all pwMS.
What will BartsMS Charity do?
The Charity intends to raise awareness of the utility of currently available DMT at any disease stage and support the development of new DMT and to help generate the required evidence to support the use of these DMT.
The Charity will therefore raise funds to:
(i)           Perform enabling work and support pilot studies into promising new DMT and
(ii)         Get the word out to patients and practitioners alike that we urgently need both investment in new treatments and a decisive strategy to make DMT more widely available.
BartsMS Charity will tie together and support several themes many of you are familiar with, including our initiatives #ThinkHand, #OffLabel prescribing, #ClinicSpeak, the #CharcotProject and #CHARIOT-MS.
Please note BartsMS Charity is not a stand alone charity, but a dedicated fund held by Queen Mary University of London, which has charitable statusWe chose this solution - rather than starting a charity from scratch - to keep any associated administrative cost at a minimum. Indeed, they are currently zero, i.e. all donations to BartsMS will go 100% towards the objectives outlined above. Just go to the drop down menu on this page and chose destination "01. Barts MS". Any amount will help!
You can also follow us on Twitter.
Thanks for your support!

14 comments:

  1. I suppose you have to pay for those business class flights somehow ;-)

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    Replies
    1. Let's put it this way: If we can enable people with advanced MS who fly for business, as part their job, and they can continue to do so independently because they are on DMT, the Charity will have made a difference.

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  2. That´s MY city
    Best food and wine in the world, dont forget " pasteis de belem"

    ReplyDelete
    Replies
    1. I love them (a little too much, perhaps). You can get a reasonable copy of the original in Whitechapel.

      Delete
    2. Actualy the best one are in Chiado, Praça Luis de Camões
      A very tiny place always packed called "Manteigaria"
      Dont tell anyone
      Loll

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  3. I'm sure you'll be there to ensure that this does not happen!:-)

    ReplyDelete
  4. =~D .... Best news story I've stumbled across tonight. Brave work. God bless.

    ReplyDelete
  5. Sorry i am confused about BartsMS Charity

    You say :Our first key objective is to enable every person with MS access to effective disease modifying therapies (DMT), regardless of their disability and their economic background.

    And than you say:
    The Charity will therefore raise funds to:
    (i)Perform enabling work and support pilot studies into promising new DMT
    So is it a scientific research charity or a medical social one?

    ReplyDelete
    Replies
    1. A scientific research charity, because we are a scientific research group, however if it suits our strategic research aims, it will be flexible. As to promising new DMT, these may not be immune modulators but may be a disease modiying neuroprotection agents of which we have a number in "in invention".

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  6. Re. " enable every person with MS access to effective disease modifying therapies (DMT), regardless of their disability and their economic background. "

    Do you mean in the UK/GB or UK/GB plus international?

    ReplyDelete
    Replies
    1. Yes, this is part of the mission. We don't accept that pwMS in lower and middle income countries are regularly unable to afford effective DMT.

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    2. Noble indeed...So Its like Bill & Melinda Gates Foundation
      But for Ms?
      How you gonna do that dmts are expensive
      Thanks
      Luis

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    3. If you have their mobile number let us know:-)

      Delete

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