70,000
Euro to the CFS Research Foundation from our research fund."
===============================
The Irish ME/CFS Association - for Information, Support & Research (Irish
ME/CFS Association for short) is pleased to announce that a few months ago
we
gave from our research fund:
10,000 Euro to ME Research UK (formerly known as MERGE) (research)
http://www.meresearch.org.uk [AOL: <a
href="http://www.meresearch.org.uk">Here</a>]
and
10,000 Euro to the CFS Research Foundation (CFSRF) (previously known as the
Persistent Virus Disease Research Foundation (PVDRF))
http://www.cfsrf.com/ [AOL: <a href="http://www.cfsrf.com/">Here</a>]
[Currency rates vary but the 10,000 Euro resulted in £8391.57 for ME
Research UK]
****This means that we have now given 70,000 Euro to ME Research UK and
70,000
Euro to the CFS Research Foundation from our research fund.****
We have also given other (much smaller) amounts at other times e.g. when Dr
Vance Spence gave three talks in the Rep. of Ireland in 2005 and Dr.
Jonathan Kerr gave two talks in the Rep. of Ireland in 2006, we gave the
entrance fee of 5 Euro to ME Research UK and and CFS Research Foundation
(CFSRF) respectively.
Raffles were also arranged for when they were over and again all the money
was given to the respective of charities.
I have previously posted to Co-Cure a report on one of the Blue Ribbon ME
Awareness Campaigns we have run: http://tinyurl.com/3o7df [AOL: <a
href="http://tinyurl.com/3o7df">Here</a>]
i.e.
<http://listserv.nodak.edu/scripts/wa.exe?A2=ind0103A&L=co-cure&P=R142>
[AOL: <a
href="http://listserv.nodak.edu/scripts/wa.exe?A2=ind0103A&L=co-cure&P=R142"
>Here</a>]
BRAME (Blue Ribbon for the Awareness of ME) http://www.brame.org [AOL: <a
href="http://www.brame.org">Here</a>] supply us
with the blue ribbons, collection boxes, etc. BRAME is run by volunteers,
Tanya
Harrison (a severely affected PWME since she was a child) and her mother and
carer, Christine Harrison. Blue Ribbons are light to post so BRAME can send
them to anywhere in the world.
Four local groups have been set up in the Rep. of Ireland in the last few
years (Ballinasloe, Galway City, Killarney and Waterford) and they have all
held collections which have contributed to the total research fund. (Aside:
A group in Gorey was just set up this month so they have not had time to do
anything).
The money we have raised for research over the years included the proceeds
of one golf classic and part of the proceeds of another golf
classic (the rest went to running the group).
Some of the money would have been from individual members/families with
ME/CFS giving personal donations of 10/20/40 Euros which can add up when a
sufficient number gives.
A few hundred individuals have donated or collected over the years - too
numerous to mention.
A few years ago, we started to encourage members to set up standing orders
to our
research fund. Now just over 9000 Euro (annualized) is going into the
account from members and their family members and partners.
Before we pointed out people could set up standing orders, we would only
have got a few single donations from members or family members over the
years; however now many people are giving over 100 Euro a year with some
giving even more. This is because when donations are spread out, people
don't get "big hit" to their pocket at once e.g. 10 Euro a month vs 120 Euro
in one go. Also there is no work involved - once it is set up one doesn't
need to get cheques/postal orders and stamps if one wants to donate.
It would be great if each country had at least one research fund in it. It
can be hard for groups to donate to research from their general funds but
having a specific research fund encourages extra donations from ME/CFS
community. Generally we haven't noticed a decrease in donations to the
general fund from members: people who are into research and are seeing that
the group is raising money for research can be supportive of it and realise
it needs to continue to exist. Indeed members who are very into research
may get involved as general volunteers as they want the group to grow and
certainly not get smaller or struggle. Also having a specific research fund
can keep people who have been diagnosed longer interested in the group -
after a few years they may be less interested in support but still
interested in raising money for research. People who have been diagnosed
longer can be very useful to have in a group as they can be well-read on the
illness. So having a specific research fund can have a positive overall
general effect on the group.
Anyway this has become rather long but we just thought we would point out
how one group in Ireland (population: 4.46 million - there are two national
groups in Ireland (the other is the Irish ME Trust which has also supported
ME Research UK in recent years)), has raised money. We have not raised the
money by getting very rich people to donate (although perhaps that can work)
but have still managed to raise some funds.
Hopefully by lots of countries raising money progress can continue to be
made. The recent exciting research on XMRV funded from private money shows
that private money can be very good for bringing about breakthroughs in
research.
There are so many people affected around the world that it would only take a
small percentage to fundraise and/or donate regularly to make a big
difference.
Regards,
Tom Kindlon (Assistant Chairperson) & Orla Ni Chomhrai (Secretary)
Irish ME/CFS Association - for Information, Support & Research
---------------------------------------------
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