Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Join OMF's International Coins for a Cure Campaign

Discussion in 'Latest ME/CFS Research' started by Ben Howell, Sep 11, 2017.

  1. Ben Howell

    Ben Howell OMF Correspondent

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    [​IMG]


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    Coins For A Cure was inspired by one patient's hope for a cure. Eimear Forde's family has been going door-to-door and all around her town in Ireland collecting donations to support OMF"s research.

    [​IMG]
    One of Eimear's friends came to her home and emptied a piggy bank full of coins into her collection bucket.

    This inspired Eimear and her family to launch OMF's "Coins For A Cure." In her first collection, they donated over $650 USD. Eimear said,"Some of the donations are small but it all adds up!! We have to find some solutions to this awful disease, I want to do all I can to help."

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    Join Eimear, and from now until September 25 collect coins. Ask your family and friends to donate their spare change and to empty their piggy banks. Invite local businesses to put a collection jar by their registers. You can get your company, group, church or organization involved too. Together, let's make this an international Team OMF collaborative effort.

    Be a part of Coins For A Cure and help accelerate research to help millions of patients.
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    If you can help/join in this that would be awesome :)

    Thanks,


    B

    @Janet Dafoe (Rose49) @AshleyHalcyoneH
     
    Last edited: Sep 11, 2017
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  2. Joh

    Joh Inactivist

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    Is this our very own @neweimear? :) (I'll delete this message at once if don't want to be appear here). Awesome! Thank you so much! :balloons::trophy:
     
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  3. Jesse2233

    Jesse2233 Senior Member

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  4. jstash

    jstash

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    I know this is much easier said that done...but isn't it said that there are around 17m people worldwide with ME?

    Each of us donating £1 each would fund OMF for three years.

    Even if you shave it down to 1% of that figure...that 1% donating a one-off of £30 each would give the OMF that $5m funding that it needs. This seems achievable, but coordinating all these different fundraising efforts to trickle down to each country's charities and then local support groups seems v difficult.

    Is the OMF spending much time on dedicated fundraising outreach at the grassroots level?
     
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  5. Joh

    Joh Inactivist

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    Yes! You can check out all of the efforts/options/ideas on the website. The OMF is doing really great work with fundraising - of course we still need more money!

    Just some ideas in no particular order what some of the problems are: Up to 91% of us are undiagnosed. Up to 85% of us can't work and we have to fight to even get basic disability payments (= low income). The BPS ideas are mainstream, so patients have to research on their own and find out about biomedical research and the OMF. ME clinics and psychotherapists tell you you shouldn't get information or join a forum. Most German patients in my German forum don't speak enough English (or are too brainfogged for a foreign language) and have no idea about the great research that is happening out there - I guess that's true for most countries (but OMF started to translate newsletters with volunteers). A lot of people are too sick to follow research or use the internet....

    But I know what you mean, I often have the same thought, we should in theory be an unstoppable force with 17 m patients (and we will be one day :)).
     
    Last edited: Sep 11, 2017
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  6. Ben Howell

    Ben Howell OMF Correspondent

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    Indeed. Good points. The issue is reaching all or even a substantial proportion of these patients and their families. It's really hard to do but we are working on it. The forum here is one representation of patients in some ways, but there are obviously millions that are not on here of course and completely unaware of OMF and the incredible research.

    We need to reach those that have just been diagnosed, (first port of call here in the UK is NICE and CBT and GET) and people need to realise the grim reality of this disease. The amount of people I have seen post in other forums (patient) blissfully unaware of the dangers of undertaking GET that they've just been 'prescribed' unaware no cure exists is mind boggling. We need to reach the severely ill bedridden patients and also their families. We need to reach the mild and the moderate. So we need to work on this on all fronts. Thats where word of mouth becomes very important :)


    B
     
    Last edited: Sep 11, 2017
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  7. Joh

    Joh Inactivist

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    Hi @Ben Howell, at the symposium Linda said in the end that pwme from around the world receive OMF's newsletter.
    I'm interested in the number she mentioned. I understood 90 countries! :woot: Couldn't believe it and went back because I thought she must have said 19 (still al lot!), but it still sounded like 90 countries to me. Wanted to ask you since then if you know which number is right?
     
  8. Webdog

    Webdog Up to 91% remain undiagnosed

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    Remember, up to 91% remain undiagnosed in the US. I would expect diagnosis numbers are even worse worldwide.

    Edit: I believe getting people diagnosed is one of the most important factors in fundraising.
     
    Last edited: Sep 11, 2017
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  9. Ben Howell

    Ben Howell OMF Correspondent

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    Hi @Joh

    Yes you are right it is 90 countries :)


    B
     
  10. Joh

    Joh Inactivist

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    Thanks @Ben Howell. That is simply unbelievable! I think I couldn't even name 90 countries. :whistle: Perfect work in just the short timespan of a few years since the OMF was founded!

    Of course I'm not celebrating that there are so many ME sufferers worldwide, what is extremely sad. But I used to work for NGOs, so I absolutely appreciate the great outreach and fundraising work the OMF does. And know how important newsletter numbers etc are.

    After I heard the number 90, I looked up how many countries there are exactly worldwide (193+vatican+12 unclear). The number 90 proves that ME really is a worldwide problem.
     
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  11. neweimear

    neweimear

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    Yes it is me!!!
     
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