Andy
Retired committee member
https://www.bbc.co.uk/news/uk-scotland-49661840
Link to the Clinic's website, https://www.annerowlingclinic.org/
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JK Rowling donates £15.3m to Edinburgh MS research centre
- Thread starter Andy
- Start date
Link to the Clinic's website, https://www.annerowlingclinic.org/
Good for her and lucky for them. We clearly are lacking wizarding school authors in our community
Edit I think that it does Also emphasise the power of one rich person to really boost research in an area. What’ she’s given, without too much of a crater in her multi -million fortune, is around the entire USA & UK yearly state ME/CFS research funds combined?
Perhaps we should start compiling accessible material which can be sent to the rich and famous & try to get them as ambassadors too. Obviously it helps if there’s immediate connection to the cause.
Edit there might be knock on benefit for our community, the charity webpage has this quote
Edit I think that it does Also emphasise the power of one rich person to really boost research in an area. What’ she’s given, without too much of a crater in her multi -million fortune, is around the entire USA & UK yearly state ME/CFS research funds combined?
Perhaps we should start compiling accessible material which can be sent to the rich and famous & try to get them as ambassadors too. Obviously it helps if there’s immediate connection to the cause.
Edit there might be knock on benefit for our community, the charity webpage has this quote
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Dx Revision Watch
Senior Member (Voting Rights)
Compare the income of the MS Society with the income of UK registered ME charities:
https://beta.charitycommission.gov.uk/charity-details?regid=1139257&subid=0
Year end 31 December 2018
MS Society
https://www.mssociety.org.uk/care-a...publications/publications-search/ms-in-the-uk
MS in the UK
We estimate there are approximately 100,000 people with MS in the UK. And that each year 5,000 people are newly diagnosed with the condition.
This means around one in every 600 people in the UK has MS.
Every day, approximately 14 people are diagnosed with MS
[PDF of statistics available]
https://beta.charitycommission.gov.uk/charity-details?regid=1139257&subid=0
Year end 31 December 2018
- Income £28.8M
- Spending £29.1M
MS Society
https://www.mssociety.org.uk/care-a...publications/publications-search/ms-in-the-uk
MS in the UK
We estimate there are approximately 100,000 people with MS in the UK. And that each year 5,000 people are newly diagnosed with the condition.
This means around one in every 600 people in the UK has MS.
Every day, approximately 14 people are diagnosed with MS
[PDF of statistics available]
Yes indeed. I wonder how that massive difference is accounted for outside of having the luck of the odd wealthy celebrity on side.
It isn’t just MS btw those figures are similar for Parkinson’s, autism etc. We are just way behind every illness that effects large size amount of people
I’m guessing MS society has to provide detailed accounts like our charities so it might be worth investigating to see how the income is generated, how much is member donations and how much fundraisers etc.
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Dx Revision Watch
Senior Member (Voting Rights)
My understanding is (but don't quote me on this in case it's no longer the case)* that the MS Society has local groups which fundraise, too.
It also has charity shops around the country.
It can afford to place ads for funding in papers like the Times.
Money makes money.
And what does the MS Society spend some of its funds on? On funding Chalder and Moss-Morris studies. Ah, well...
*Edited to add: Yes, the MS Society has a network of 270 volunteer and local support groups.
It also has charity shops around the country.
It can afford to place ads for funding in papers like the Times.
Money makes money.
And what does the MS Society spend some of its funds on? On funding Chalder and Moss-Morris studies. Ah, well...
*Edited to add: Yes, the MS Society has a network of 270 volunteer and local support groups.
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Dx Revision Watch
Senior Member (Voting Rights)
Worth a quick skim of the most recent Annual Report & Accounts:
MS Society Annual Report & Accounts
Year end 2018
http://apps.charitycommission.gov.uk/Accounts/Ends57/0001139257_AC_20181231_E_C.PDF
Finance Review
From Page 11
Income
We are delighted that through the extraordinary generosity of our supporters and the MS community we have been able to virtually maintain the 2017 income level in 2018. Income in 2018 was £28.8m as opposed to £28.9m in 2017. This is a good achievement considering the uncertain economic , environment.
Legacies
In 2018 we received over £11.9m from generous supporters who left us gifts in their wills, which was £0.4m higher than 2017. For the third consecutive year we have been grateful to receive one particularly large legacy, meaning legacy income has maintained its high level over the last three years. We are very grateful to everyone who remembered us in their will.
Donations
Once again 2018 saw individuals, friends and organisations undertake a vast range of different activities to raise funds for our vital work, donating an amazing £13.2 million in 2018 (£13.4 million in 2017). Income from charitable activities Income rose to £1.1 m from £950k due to the receipt of two grants via the Big Lottery, one for a project in Wales (My MS, My Rights, My Choices) and another in Manchester on Improving Quality of Life.
Trading activities
Income from trading activities fell to £2.1 m from £2.6m in 2017. In 2017 we held a large £1 m net fundraising event in honour of the late cellist Jacqueline du Pre whose career was cut short by MS. Although we held other large fundraising events in 2018, they were not of the same scale as the 2017 event. Expenditure - changes from 2017 Overall expenditure was similar to 2017 at £29.1 m compared with £28.8m in 2017.
Raising funds (2018: £7.5m; 2017: £7.4m)
Costs remained similar to 2017. There was some additional spend (classified as 'new donor acquisition' in the accounts), some of which related to a major public appeal planned for 2019.
Goal 1 - Effective treatments (2018: £4.0m; 2017: £4.4m)
A major new clinical trial on simvastatin was co-funded by the Society in 2017, costing the MS Society £1.2m, which boosted the 2017 spend on this goal. This is the reason for the slight decrease in 2018.
Goal 2- Responsive care and support (2018: £4.5m; 2017: £4.7m)
Our main areas of responsive care and support are in influencing policy, running our helpline and providing individual support grants to those affected by MS. There was a slight drop in individual support grants awarded in 2018, primarily from grants awarded by our local groups.
Goal 3- Preventing MS (2018: £0.9m; 2017: £ 0.8m)
Most of the money spent on this goal is through research grants we award, and the amount spent can vary year on year. 2017 was lower due to a number of research grant write backs attributed to this goal.
Goal 4- Quality information (2018: £3.8m; 2017: £3.8m)
The award-winning quality information service provided by the society has been maintained during 2018.
Goal 5 -A strong community, independent lives (2018: £6.2m; 2017: £5.7m)
Over half of the spend in this area is either support provided by our local groups or expenditure in supporting them, and there was a slight increase in spend in 2018. There was also an increase in costs on improving our digital resources, which was allocated to this goal.
Goal 6-Supporting families and carers (2018: £1.4m; 2017: £1.4m)
Expenditure on supporting families and carers was maintained in 2018.
Goal 7 - Greater certainty about the future (2018: £0.5m; 2017: £0.5m)
The spend in 2018 was mostly on research grants, with the level of grants awarded similar to 2017. Costs not directly attributed to goals (2018: £4.1m; 2017: £4.2m} These are costs that are apportioned to goals based on staff time or total direct cost as they can't be directly attributed to goals. We continue to look to reduce these costs so more money can be spent directly on our goals. In 2018 these costs fell slightly, primarily due to one-off higher spend on digital costs attributed to IT Support in 2017.
MS Society Annual Report & Accounts
Year end 2018
http://apps.charitycommission.gov.uk/Accounts/Ends57/0001139257_AC_20181231_E_C.PDF
Finance Review
From Page 11
Income
We are delighted that through the extraordinary generosity of our supporters and the MS community we have been able to virtually maintain the 2017 income level in 2018. Income in 2018 was £28.8m as opposed to £28.9m in 2017. This is a good achievement considering the uncertain economic , environment.
Legacies
In 2018 we received over £11.9m from generous supporters who left us gifts in their wills, which was £0.4m higher than 2017. For the third consecutive year we have been grateful to receive one particularly large legacy, meaning legacy income has maintained its high level over the last three years. We are very grateful to everyone who remembered us in their will.
Donations
Once again 2018 saw individuals, friends and organisations undertake a vast range of different activities to raise funds for our vital work, donating an amazing £13.2 million in 2018 (£13.4 million in 2017). Income from charitable activities Income rose to £1.1 m from £950k due to the receipt of two grants via the Big Lottery, one for a project in Wales (My MS, My Rights, My Choices) and another in Manchester on Improving Quality of Life.
Trading activities
Income from trading activities fell to £2.1 m from £2.6m in 2017. In 2017 we held a large £1 m net fundraising event in honour of the late cellist Jacqueline du Pre whose career was cut short by MS. Although we held other large fundraising events in 2018, they were not of the same scale as the 2017 event. Expenditure - changes from 2017 Overall expenditure was similar to 2017 at £29.1 m compared with £28.8m in 2017.
Raising funds (2018: £7.5m; 2017: £7.4m)
Costs remained similar to 2017. There was some additional spend (classified as 'new donor acquisition' in the accounts), some of which related to a major public appeal planned for 2019.
Goal 1 - Effective treatments (2018: £4.0m; 2017: £4.4m)
A major new clinical trial on simvastatin was co-funded by the Society in 2017, costing the MS Society £1.2m, which boosted the 2017 spend on this goal. This is the reason for the slight decrease in 2018.
Goal 2- Responsive care and support (2018: £4.5m; 2017: £4.7m)
Our main areas of responsive care and support are in influencing policy, running our helpline and providing individual support grants to those affected by MS. There was a slight drop in individual support grants awarded in 2018, primarily from grants awarded by our local groups.
Goal 3- Preventing MS (2018: £0.9m; 2017: £ 0.8m)
Most of the money spent on this goal is through research grants we award, and the amount spent can vary year on year. 2017 was lower due to a number of research grant write backs attributed to this goal.
Goal 4- Quality information (2018: £3.8m; 2017: £3.8m)
The award-winning quality information service provided by the society has been maintained during 2018.
Goal 5 -A strong community, independent lives (2018: £6.2m; 2017: £5.7m)
Over half of the spend in this area is either support provided by our local groups or expenditure in supporting them, and there was a slight increase in spend in 2018. There was also an increase in costs on improving our digital resources, which was allocated to this goal.
Goal 6-Supporting families and carers (2018: £1.4m; 2017: £1.4m)
Expenditure on supporting families and carers was maintained in 2018.
Goal 7 - Greater certainty about the future (2018: £0.5m; 2017: £0.5m)
The spend in 2018 was mostly on research grants, with the level of grants awarded similar to 2017. Costs not directly attributed to goals (2018: £4.1m; 2017: £4.2m} These are costs that are apportioned to goals based on staff time or total direct cost as they can't be directly attributed to goals. We continue to look to reduce these costs so more money can be spent directly on our goals. In 2018 these costs fell slightly, primarily due to one-off higher spend on digital costs attributed to IT Support in 2017.
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Dx Revision Watch
Senior Member (Voting Rights)
By comparison (extracted from my Post #11 of this thread)
From the Charity Commission register:
https://apps.charitycommission.gov....steredCharityNumber=801279&SubsidiaryNumber=0
ME Association
801279 - THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED
As you see, the MEA's annual income is subject to fluctuation and is relatively low compared with other patient orgs even during its more prosperous years. (It also holds reserves, as can be seen in the full Year End accounts.)
From the Charity Commission register:
https://apps.charitycommission.gov....steredCharityNumber=801279&SubsidiaryNumber=0
ME Association
801279 - THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED
As you see, the MEA's annual income is subject to fluctuation and is relatively low compared with other patient orgs even during its more prosperous years. (It also holds reserves, as can be seen in the full Year End accounts.)
Dx Revision Watch
Senior Member (Voting Rights)
From April 2009:
https://www.theguardian.com/books/2009/apr/10/jkrowling-mutiple-sclerosis-scotland
JK Rowling abandons Multiple Sclerosis Society charity amid in-fighting
This article is more than 10 years old
• Author no longer patron of Multiple Sclerosis Society
• Conflict between Scottish and London arms blamed
"We are a strong, democratic organisation and this review is being done in consultation with all of our 43,000 members. We would have preferred to do this with JK Rowling's involvement, but we appreciate that significant change can be difficult."
---------
In 2009, the MS Society had 43,000 members from a patient population (and families) currently estimated to be in the region of 100,000.
Contrast that with the memberships of AfME and the MEA from a patient population (and families) estimated to be in the region of 250,000.
https://www.theguardian.com/books/2009/apr/10/jkrowling-mutiple-sclerosis-scotland
JK Rowling abandons Multiple Sclerosis Society charity amid in-fighting
This article is more than 10 years old
• Author no longer patron of Multiple Sclerosis Society
• Conflict between Scottish and London arms blamed
"We are a strong, democratic organisation and this review is being done in consultation with all of our 43,000 members. We would have preferred to do this with JK Rowling's involvement, but we appreciate that significant change can be difficult."
---------
In 2009, the MS Society had 43,000 members from a patient population (and families) currently estimated to be in the region of 100,000.
Contrast that with the memberships of AfME and the MEA from a patient population (and families) estimated to be in the region of 250,000.
Yes
I’ve just been reading here
https://volunteers.mssociety.org.uk...s/2018/08/Annual-Report-and-Accounts-2017.pdf
By the look They spend millions to raise millions, they have 270 volunteer & support groups around the UK. They get millions in legacies, similar millions In donations and actually I was surprised that to my reading only around £5m goes on research.
They do only spend a small portion on the BPS approaches to fatigue. It is also less controversial as exercise does seem to help a bit etc. I personally don’t think they take fatigue seriously enough and was dismayed how casually they were promoting cocoa as a treatment
Dx Revision Watch
Senior Member (Voting Rights)
From the MS Society site:
For just £5 per year, why not join the UK's biggest MS community?
Add your voice to 29,000 others to help speak up about MS. Together we're stronger.
So looks as though membership has fallen since that Guardian report. But still considerably higher than AfME and MEA combined - and cheaper.
For just £5 per year, why not join the UK's biggest MS community?
Add your voice to 29,000 others to help speak up about MS. Together we're stronger.
So looks as though membership has fallen since that Guardian report. But still considerably higher than AfME and MEA combined - and cheaper.
Dx Revision Watch
Senior Member (Voting Rights)
Research Grants listed from Page 77
http://apps.charitycommission.gov.uk/Accounts/Ends57/0001139257_AC_20181231_E_C.PDF
http://apps.charitycommission.gov.uk/Accounts/Ends57/0001139257_AC_20181231_E_C.PDF
Without the high membership fee our charities income would be very low , mea have 5000 members at £20 , that’s £100 000 income.
I feel a problem is i’m not sure mea really Want to be a full coverage large scale campaigning & comprehensive support organisation (eg including issues around social care) on top of their basic support and research position and AFME who do branch into peer support and are more attractive from a support POV ( outside the scientific) are just generally useless on many fronts.
It’s not just membership in numbers is higher for MS in terms of proportion, nearly a third of those diagnosed, it’s high. It could be that the low membership fee of MS society gives them a way into the lives and pockets of many people but our charities financial position is such that they can’t make those changes to climb up the money ladder.
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The discussion about the future and funding of UK ME/CFS charities has been split off to this thread:
https://www.s4me.info/threads/the-future-and-funding-of-uk-me-cfs-charities.11315/
https://www.s4me.info/threads/the-future-and-funding-of-uk-me-cfs-charities.11315/