Invest in ME now fundraising for a Rituximab trial!

S

Sasha

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Battery Muncher said:
I can scarcely believe it, but it seems that we have raised over £50,000 in the last 3 months or so! :thumbsup: If we keep up this pace, we could break £100k before Christmas!
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There was one whacking great donation from an anonymous (I think) individual for £25k, to add to the £25k that they'd already raised from lots of smaller donations. Fantastic to have a generous person willing and able to donate such a large amount - a really big boost to the funds.
 
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Battery Muncher

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In fact, this is enough money for the preliminary work on the trial to begin!

I haven't been keeping up with the total, but looks like there was a huge offline donation?

Generous charitable foundation (offline donation) takes our total to £50k! The preliminary work for the trial can now begin! Read more here here: http://www.investinme.org/IIME-Newslet-1308-05 Rituximab Trial Status.htm
18/08/13 14:24
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And from the link:

This is due to a donation from the charitable foundation which will match our existing BRF rituximab total of £25,000 - click here. The charitable foundation currently wishes to remain anonymous but they have asked us to keep them informed of the progress of plans for the trial and we are sure that the ME community will join us in thanking them for this wonderful support
This now means that the first part of this project can be initiated by the UCL team without delay.
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Sasha

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Oops, charitable foundation donor, I had forgotten.

We do need more charities to pledge to this trial - we need big chunks of money like that if we're going to get this thing going soon but we also need to make our individual donations.
 
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Battery Muncher

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Yep, very much agree. Charity foundations vital, but to encourage them we have to lay the groundwork for them first...

As mentioned in the link, this charity seems to have been encouraged by the good progress on the fund, and decided to match existing donations (at that time, £25k)

PS: sorry for the confusing double post, I couldn't edit the first one
 
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Sasha

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Battery Muncher said:
Yep, very much agree. Charity foundations vital, but to encourage them we have to lay the groundwork for them first...
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Yes, quite possible they're waiting for a study protocol to review before they declare. We could see some rapid acceleration later, but even then I'd be surprised if the charities acting together could provide the full £350k. We patients and those who care about us need to be donating and fundraising for this.
 
sproggle

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£200k Pledge to IiME for UK Rituximab Trial We can announce that Invest in ME have been given a pledge of £200,000 from a foundation towards the UK rituximab clinical trial – bringing the fund to almost £260,000. The foundation has two conditions to this pledge (i) That IiME continue to be the lead patient organisation steering this trial (ii) That IiME continue to raise funds for the remaining £90,000 that is required for the full trial to proceed. The trustees of IiME have accepted these conditions willingly and are grateful for this extraordinarily generous offer. www.ldifme.org

Invest in ME Announcement (Scroll down to 'We can now announce') -

'We can now announce that IiME have been given a pledge of £200,000 from a foundation to supplement the amount we have raised already.

This would bring our rituximab fund to almost £260,000 – that is over two-thirds of the requirement for the clinical trial to proceed.


The foundation has two conditions to this pledge
  • That IiME continue to be the lead patient organisation steering this trial
  • That IiME continue to raise funds for the remaining £90,000 that is required for the full trial to proceed
The trustees of IiME have accepted these conditions willingly.

We are thankful and grateful for this extraordinarily generous offer from the donating foundation. It is an amazing gesture from compassionate and caring people who want to make a difference. It allows the hopes of many patients to become a reality – allows a vision to be maintained that there is a future for ME patients and that we, patients and families, can make a difference.

We have communicated this to the UCL team with whom we are working to make this trial a reality.

We are now distributing this information to our supporters.

There were many who doubted that IiME and our supporters could achieve this. Though we knew this would be a daunting task we have never doubted it was possible.

We continue our efforts to raise the remaining funds.

To our supporters who have been with us since the beginning and everyone who has contributed in so many ways to this trial we want you to know this is your result. It is what you have achieved. It is what we have achieved together.

We thank all those who are supporting this trial and we will continue to provide information on the status of the trial as we progress.

We continue to welcome support. Please contact IiME directly if you or your organisation would like to assist or contribute.

If anyone would like to ask any questions about the UK rituximab trial then please use the Contact form on the rituximab web site [4].
A status is available [5].

With this trial we can take a huge leap forward in ME research.

If you are also interested in the other research projects that Invest in ME is organising and/or funding please see our main website and free newsletter [6].


Let’s Do Research! Let’s Do It For ME!

Thank You.'

http://www.investinme.org/IIME Statement UKRT 2013-09-24.htm

:thumbsup:

The total now stands at £259,000

bw,
Jan
 
amaru7

amaru7

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I'm too sick and bedridden, all I can say is that Rix has been used at the Berlin clinics Charité and it has made sick people much worse so they stopped it. Anyway I wish the people with the funds all the best, may they find a better substance through chance to study on
Valentijn yea,. sure why not..having faith is a good thing : )
 
amaru7

amaru7

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btw EBV for sure has a say in our disease amongst others, but I think the concept of strenghening the host instead of attacking the invaders is always to be prefered as long as it's possible ,my two cents
 
Snow Leopard

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amaru7 said:
I'm too sick and bedridden, all I can say is that Rix has been used at the Berlin clinics Charité and it has made sick people much worse so they stopped it. Anyway I wish the people with the funds all the best, may they find a better substance through chance to study on
Valentijn yea,. sure why not..having faith is a good thing : )
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Even if it makes a few people sick and is not a great long-term treatment, it is still a major breakthrough if it helps some people as it puts ME/CFS into the autoimmune basket, which will lead to a major increase in research.
 
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lansbergen

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amaru7 said:
btw EBV for sure has a say in our disease amongst others, but I think the concept of strenghening the host instead of attacking the invaders is always to be prefered as long as it's possible ,my two cents
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Depends on the invader.

Before I fell iII I thought treat what you can treat but now I think be selective in what you treat. Treatment can be a stressor.
 
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Sasha

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Min said:
i believe the ME Association on facebook made vague promises of donating £50,000 to the trial. If they put their money where their mouth is the trial woud be almost funded

http://www.meassociation.org.uk/201...ssociation-doing-about-rituximab-8-july-2013/
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They made a pledge that if the protocol, when finalised, for the IiME trial met the standards of their normal peer-review process, they would donate £50k plus another £10k that had donated specifically for that purpose, directly to UCL, if memory serves.

I seem to remember at the time that some people were upset that the MEA wanted their normal peer-review process and that they didn't donate to IiME money that had been donated to the MEA.

Personally I've never understood those objections. Any charity has a duty to its donors to be responsible in how it gives its money and I would expect a normal peer-review process to be followed whenever giving money to any study (and the MEA made it clear at the time that they didn't expect the peer-review process to raise any major issues, given the quality of the team). Also, if for some reason the trial didn't come off (and as I understand it, it hasn't yet been fully costed and its final goal may not be £350k), if the MEA had donated £60k to IiME and couldn't get that money back then it would have acted extremely irresponsibly.

I support the Rituximab trial and have donated. I look forward to the protocol being ready and things moving forward.
 
Min

Min

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Sasha said:
They made a pledge that if the protocol, when finalised, for the IiME trial met the standards of their normal peer-review process, they would donate £50k plus another £10k that had donated specifically for that purpose, directly to UCL, if memory serves.

I seem to remember at the time that some people were upset that the MEA wanted their normal peer-review process and that they didn't donate to IiME money that had been donated to the MEA.

Personally I've never understood those objections. Any charity has a duty to its donors to be responsible in how it gives its money and I would expect a normal peer-review process to be followed whenever giving money to any study (and the MEA made it clear at the time that they didn't expect the peer-review process to raise any major issues, given the quality of the team). Also, if for some reason the trial didn't come off (and as I understand it, it hasn't yet been fully costed and its final goal may not be £350k), if the MEA had donated £60k to IiME and couldn't get that money back then it would have acted extremely irresponsibly.

I support the Rituximab trial and have donated. I look forward to the protocol being ready and things moving forward.
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So does this mean that the MEA may still be going to donate £50 or £60k to this trial? I don’t understand.
 
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Sasha

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Min said:
So does this mean that the MEA may still be going to donate £50 or £60k to this trial? I don’t understand.
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Yes, I assume the pledge still holds good. I recall they made an initial pledge of £50k and then another £10k was added to it. Whether they give the money to UCL depends on their research review committee passing the study protocol (which everyone expects). Prof. Edwards and his team are currently planning a pre-trial study that will inform the design of the actual trial - and it's the protocol of the actual trial that the MEA need before they can assess it.

Have I answered your question? I'm not sure which bit you didn't understand.
 
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