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Join our crusade for a ME/CFS support worker!

Discussion in 'Fundraising' started by CFSNZ, Apr 23, 2015.

  1. CFSNZ

    CFSNZ

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    Hi guys! I'll keep this short for the brainfogged among us (myself included)!

    I'm humbly asking the Pheonix Rising community for their help in ME/CFS Support (Auckland) Inc's campaign to raise funds for a field worker. Anything you can do, even simply 'liking' our Facebook page, would be really awesome and go a long way towards helping the 6,000+ ME/CFS sufferers in our area.

    Our cause
    • I'm based here in little old New Zealand. I'm working with a local charity, called ME/CFS Support (Auckland) Inc., to raise funds for a field worker.
    • There are a number of field workers active in New Zealand however none cover our largest city, Auckland.
    • Around 1/3 of our population resides in Auckland and there are 6,000+ ME/CFS sufferers
    Please support us
    • I'd like to reach out to the Pheonix Rising community and humbly ask for your help
    • We are seeking donations towards the US$26,500 annual salary for a fieldworker
    • If you are in a position to make a donation, that would be awesome! No donation is too small. Every dollar counts and will help us in our goal. Please see the link to our fundraising page below :)
    • But I suspect most with ME aren't and there are other ways you can support our cause
    • Simply 'liking' our Facebook page or sharing with friends would go a long way towards raising awareness and helping our campaign. Facebook page below :)
    Field workers and ME/CFS Support (Auckland) Incorporated
    • Field workers in other cities help ME/CFS sufferers immeasurably! Imagine if you had someone who advocates for you, helped you gain access to all the disability and financial support services available, got you to local support group meetings, and more. This is what we are aiming for in Auckland
    • We established our charity to hire a field worker. The board has a good mix of ME/CFS people, to represent the interests of sufferers, and healthy professionals, to help us reach our goal. They are a great team.
    Thanks so much for reading guys! This 'concise' overview for brain-fogged people has become more waffly that I intended!

    Please support us by:

    Thank you :)
     
    Lacey, Mogwai, AnnaDove and 5 others like this.
  2. CFSNZ

    CFSNZ

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    Just broke the $500 mark in the first two days of the campaign!
     
    justy, Lacey, rosie26 and 4 others like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    @CFSNZ Just curious, do you know what cities (anywhere in the world) have a fieldworker position like this that already exists? I was an LCSW for 16 yrs until CFS ended my career but I have never heard of this before! Maybe it is just not in my city?
     
    oceiv and CFSNZ like this.
  4. CFSNZ

    CFSNZ

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    Hi @Gingergrrl. It's a good question and unfortunately I don't know the answer!

    Here in New Zealand we have a field worker in all five of our largest cities except for Auckland. This is a bit of an anomaly since Auckland dwarfs the other in terms of population (over twice the population of the 2nd largest city)!

    Given NZ's size it's feasible to cover off an entire town with a field worker so perhaps that's why it's not common elsewhere?

    I see you do some volunteer work yourself. Is that for CFS?

    Field workers are awesome. Get people access to all the disability services they are entitled to, get them to support group meetings, even call on their birthday! Sounds small but makes a huge difference for people who have been stuck in bed for years and can't fend for themselves.
     
    justy, Hutan, Lacey and 6 others like this.
  5. CFSNZ

    CFSNZ

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    By the way @Gingergrrl, sorry to hear you had to give up your career. I am in the same boat so know what a blow it is.
     
    Lacey, oceiv and Gingergrrl like this.
  6. aimossy

    aimossy Senior Member

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    I think Field Workers in the NZ sense do and can do a lot. They endeavour to provide education and support, not only to sufferers and their families, but they can liaise with GP's and GP practices, hospital specialists, help support people with applying for benefits and increase awareness in general in the community and within the medical community. They advocate in a very grass roots way that really supports in a practical sense. You do need people with confidence and skill employed to do this that are very professional in order to do the job well. I think the role is very important. It can be a hard job especially in an area where the illness has such lack of acceptance.

    I don't know if they have this in the UK as well through their support groups. NZ support groups are like very small mini organisations and often run support group meetings for members. Then we have a larger NZ Organisation that is a national org. I think I am right in saying that @CFSNZ. I don't think they have anything like this in the USA @Gingergrrl ?

    Ours may have developed because we have charitable foundations, for example like the Stroke Foundation that have Field Workers, as many illnesses do here, separate from the usual Public Health system. So it is probably modelled off those structures. It is still a charity type thing but can provide very good support for many.
     
    Last edited: Apr 25, 2015
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  7. CFSNZ

    CFSNZ

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    Bang on @aimossy :) I forgot to mention that a key role for the support worker is liaising with GPs and educating them. This is the model in other cities.

    Our support groups that aren't attached to a field worker have a mailing list of up to 80, but only a turn out of 8-20 at a meeting! But the groups with a field worker are way larger.

    Where abouts in New Zealand are you based?
     
    Ritto, rosie26, aimossy and 1 other person like this.
  8. aimossy

    aimossy Senior Member

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    Otago :)

    Auckland has a huge population. It is so important to get this happening there. It is great to see the efforts, thank you!
     
    rosie26, CFSNZ and oceiv like this.
  9. Bob

    Bob

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    I've not heard of this sort of thing before now, for ME/CFS, and so I'm sure that we don't have a service like this in the UK.
    It sounds very interesting, and the sort of thing that our patient organisations should perhaps be looking into.
    i.e. finding out how it works, and seeing if it would be feasible in the UK.
    Cost is always an issue for small patient organisations, of course.

    Great project. Best of luck raising funds for it.
     
    Last edited: Apr 25, 2015
    justy, oceiv, CFSNZ and 3 others like this.
  10. aimossy

    aimossy Senior Member

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    @Bob
    Lots of grant applications are made to try and help fund these support roles as well, and this is an ongoing process for support groups and the national org as I understand it. We don't have call lines like the UK, but of course you can call the national organisation number and support group numbers. Not all support groups have a Field Worker in NZ as far as I know - it's hard work to make happen but really worth it. I understand the Auckland support group has worked hard regarding grants and continues to. I hope people help kick start them its our biggest city and it would make an impact. It seems membership/interest may be increasing in general across the board, possibly because of recent press with IOM and research that has been published.
     
    Last edited: Apr 25, 2015
    rosie26 and Bob like this.
  11. CFSNZ

    CFSNZ

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    Thanks @Bob! Hope you guys in the UK get something similar soon.

    We're at $1,000 so far so it's a nice start. Hoping the campaign really gets a boost on May 12 ME Awareness Day.
     
    aimossy and Bob like this.
  12. CFSNZ

    CFSNZ

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    Exactly @aimossy. We have a professional funder who ticks away at the grants in the background. She has a great track record and was previously the funder for Arthritis NZ.

    So hoping to get this up and running sooner rather than later!
     
    AndyPandy and aimossy like this.
  13. aimossy

    aimossy Senior Member

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    That is brilliant @CFSNZ !
     
    CFSNZ likes this.
  14. SOC

    SOC

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    Patients in other countries often talk about getting home-based social services that appear to be unavailable to us in the US -- shoppers, people to help with the housework, drivers, and so on. I guess we are supposed to just muddle along as best we can with limited grocery delivery, dirty houses, and no way to get to outside events. I won't even start on getting help gaining access to disability and financial support services. :rolleyes:

    It's not just your city. There is certainly nothing of this sort in my city, either. There are no services available to me at all. If I become housebound again now that I live outside a fresh grocery delivery area, I'm doomed. Ain't nobody coming to help me with access to services or activities of daily living or anything else. :(
     
    Bob, rosie26, oceiv and 3 others like this.
  15. daisybell

    daisybell Senior Member

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    @CFSNZ does the Society have a website?
    I know how hard the funding is to obtain through my role with another charity.
    I think one of the problems in NZ is the sheer number of incorporated societies and trusts in the charitable sector. Getting a share of the grant pie is extremely difficult, and long term financial viability a real struggle.
    I hadn't realised that there are fieldworkers in the other main cities. Are they all funded locally rather than through the national organisation? Can you tell me why this is so? Please PM me if you would rather!
     
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  16. CFSNZ

    CFSNZ

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    @SOC Sorry to hear about the lack of support in the USA. What sort of CFS charities do you have and what services do they offer?
     
    oceiv likes this.
  17. CFSNZ

    CFSNZ

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    @daisybell It's a crowded space in the NFP sector isn't it?! I did a search on the charities commission and it came up with tens of thousands of hits! (from my brainfogged memory anyway).

    I'm optimistic we will get there though. The lady doing our current grant applications pulled in $100,000 in a year and a half for a new charity. She truly is awesome.

    Our president is the Chief Financial Officer of a Manakau Institute of Technology. She has some awesome project management skills and good business networks. I'm really glad she's on board. Plus she's healthy!

    The other cities with field workers are Wellington, Christchurch, and Tauranga. Hamilton has a field worker who also cares for MS and I think the president of ANZMES helps people in Dunedin.

    Funding isn't through the national body and is typically via grant applications (e.g. Lotteries).

    Our website is under construction with a target of launching on Awareness Day. It's looking awesome - I'll PM you the link :)
     
    daisybell, SOC, Bob and 2 others like this.
  18. aimossy

    aimossy Senior Member

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    @SOC Home help and disability services can be very hard to get here as well for people with ME/CFS. Also cutbacks in general in public health sector are making it harder for illnesses that are more accepted (to put it nicely). I really appreciate that generally we don't have to deal with insurance companies!

    Although some people do have insurance here, like extra income protection insurance, and have a hard time making it cough up I hear. I actually find it really hard to imagine coping in scenarios many have to deal with.

    @CFSNZ That is right, Dunedin has MEISS support group. The National president is based here and also involved with MEISS support group. It is quite strong down here.

    Hard work with the Medical School re education is happening which I think is pretty great and it will be wonderful when this starts happening at the Auckland School. Prof Warren Tate (researcher) has been invited to talk to the med students again regarding ME/CFS this year. Both Prof Tate and Dr Ros Vallings have given lectures to med students last year.

    The IACFSME primer and Charles Shepherd's Purple Booklet from MEA gets disseminated widely wherever possible all round NZ and these have been popular. They were used in tutorials with students at the med school as well. @charles shepherd you might like hearing about that if you haven't already.

    I think NZ size helps in some ways but we got absolutely no coverage of Columbia landmark findings that was reported in big media elsewhere apart from a new science discussion on National Radio which was actually quite well done . Fingers crossed for may 12 coverage.
     
    Last edited: Apr 26, 2015
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  19. SOC

    SOC

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    None and none.
     
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    As SOC said, none unless you happen to belong to a church which decides to privately try to help you. I just moved next door to a health food store knowing that, at times, that would be my only way to get food.

    Though members here in the US feel glad that some in other countries get help with services, we are also amazed as we are pretty much left to our own devices. That is why so many have to move in with family.

    Sushi
     
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