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Getting Help from Civilians

Discussion in 'Advocacy Projects' started by justinreilly, Apr 9, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    We really need help from pw/oME! How can we do this most effectively. We can't get done what needs to be done alone. There are many of us and there are a good number of here and elsewhere who donate money, educate themselves and speak out.

    Unfortunately, we are so sick and stripped of resources by ME and our persecutors that we can not be effective enough on our own. We have donated millions of dollars over the years to research and CAA. CAA has done a bad job of advocacy. We need our advocacy groups to do a better job and this will take money.

    We have made some progress with research. But we need hundreds of millions to go to research every year in order to make real progress toward treatment and cures. MS, cancer and some other diseases that get hundreds of millions a year are still without effective treatments. AIDS is somewhat manageable, it took Billions of dollars a year in research to get there.

    A few million a year is not going to cut it and every dollar a pwME donates is probably taking away from her or his treatment.

    The whole situation is an emergency, a long emergency, but an emergency nonetheless. We need more resources and help. We need money for WPI and other research and we really need effective advocacy so we can get the hundreds of millions of dollars from governments which we need for research (in addition to the other goals we need to accomplish through advocacy). And advocacy effective enough to do this requires substantial money.

    We also need more people to become educated, spread the truth and push for change.

    So we need to try to get civilians (pw/oME) involved. Obviously, this is very difficult as the usual suspects have done a great job of making us suspect in the eyes of the public, medicine, and even our own families and friends. Please post your ideas of what groups or individuals might be able to help us and how we can get their help.


    Civilians and Fellow Travelers to Rally:

    A. Interested People/ "Natural Allies":
    i.e. People with Some Interest or Something to Gain (even if it's slight or emotional), from helping pwME

    - Friends and Relatives

    - AIDS Activists

    - Activists and Research Orgs for other Diseases potentially related to HGRVs and other ME-related viruses esp. retroviruses
    -- Autism
    -- Leukemias and Lymphomas

    - Activists and Research Orgs for Diseases with similar pathophysiology and/or suspected causes to ME
    -- Fibromyalgia
    -- Multiple Sclerosis
    -- Autism
    -- ME-related cancers eg, NHLymphomas, Chronic Lymphocytic Leukemia, Brain Cancer

    - Women's Rights Orgs (ME is not a "woman's disease" but most of the studies say a majority of pwME are women)
    -- General Women's Rights Orgs
    --- NOW
    -- Women's Health Orgs

    - Activists-at-large looking for a good cause

    - Celebrities or other pwME or friends and relatives of pwME who have followers or fans (we seem to be one of the few diseases where most well-known pwME have generally not made a public campaign over it)
    -- http://en.wikipedia.org/wiki/List_of_people_with_chronic_fatigue_syndrome
    -- http://en.wikipedia.org/wiki/Category:People_with_chronic_fatigue_syndrome


    B. Our Personal Contacts/ Connections with Influence:
    i.e. Influential People to which You have some Connection, even if Remote (though they not have a self-interest in helping pwME)

    - Medical:
    -- activists for other diseases, medical doctors (especially those who like to publish or are involved in medical 'societies' such as AMA), med school professors, administrators or board members, teaching hospital administrators or board members, biomed scientists, psychologists or
    -- drug company execs.

    - Media:
    -- Reporters, press and journal editors and publishers, tv or radio execs, documentary filmmakers or producers, film students looking for a documentary project, bloggers
    -- celebrities or anyone else who has their own "tribe" of fans, followers, listeners or readers, or
    -- health PR people,

    - Non-profit:
    -- Directors or officers of charitable foundations, current or potential donors (esp., but not necessarily wealthy), activists-at-large, fundraisers.

    - Government:
    -- Members of congress, congressional staffers, government health agency administrators, health care lobbyists, people with political favors to cash-in, or,
    -- if you live in a state with a senator or a district with a representative on a committee which budgets NIH and CDC, anyone (they can forward emails and sign petitions to the Senator or Rep and/or accompany you to a meeting with a congressional staffer for a show of support).

    Other Civilians:

    Bernadine Healy, MD, former NIH Director (hired Francis Collins and accused government of a conspiracy to stifle vaccine/autism research)
    http://www.youtube.com/watch?v=rHxqTyAxZZE&feature=feedf
    (went to my high school; will try to contact her at some point -Justin R.)

    Richard Blumenthal, atty gen of CT (brought suit against Lyme Org infested by insurance doctors)
    http://www.ct.gov/ag/cwp/view.asp?a=2178&q=295440


    Tactics

    - Soliciting donations for WPI (or any other effective ME org)
    -- "Birthday Wishes"
    --- http://wishes.causes.com/

    - YouTube videos (short, original and most of all funny are good for getting views)


    Resources

    Fundraising (the art of begging)
    Books


    Writing for a Good Cause: The Complete Guide to Crafting Proposals and Other Persuasive Pieces for Nonprofits [Paperback]
    Joseph Barbato (Author), Danielle Furlich (Author)
    4.8 out of 5 stars (12 customer reviews)
    $11.55
    http://www.amazon.com/Writing-Good-Cause-Persuasive-Nonprofits/dp/0684857405/ref=pd_sim_b_30

    Effective Fundraising for Nonprofits: Real-World Strategies That Work [Paperback]
    Ilona Bray J.D. (Author)
    4.7 out of 5 stars (33 customer reviews)
    $18.66
    http://www.amazon.com/gp/product/14...&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846

    How to Write Successful Fundraising Letters, with CD (The Jossey-Bass Nonprofit Guidebook Series) [Paperback]
    Mal Warwick (Author)
    4.8 out of 5 stars (16 customer reviews)
    $24.39
    http://www.amazon.com/gp/product/0787999083/ref=ox_sc_act_title_4?ie=UTF8&m=ATVPDKIKX0DER
  2. 5150

    5150 Senior Member

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    hi justin,

    of course you are right about this. after today's non-action in Bethesda, it's more obvious. we, and WPI, are hung out to dry. hopefully it will change, but it didn't today and it could have, and it should have.

    in answer to your question re how to best get help from outside our ranks, my thinking is that the AIDS activists are well equipped for this. God knows they went out and fought, and many of us were, and still are, right there beside them. their cause is rolling along, and now we need some help. It's about life and death for us,too.

    maybe i can add more later; i'm exhausted right now.

    adding: does WPI have an official Funds Raising office, someone specifically dedicated to that work?
    apply to Bill and Melinda Gates Foundation for grant support
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    FRIENDS AND CONTACTS:

    I am not one to evangelize and push people to pay attention to and donate money to my cause, but ours is such a crisis situation that we need to really reach out and ask for help from friends and contacts. You can (1) educate them as members of the public or a profession relevant to ME, (2) ask them for money, (3) ask them to help out (eg signing petitions, voting for a charity in a contest, sending pre-written emails to their representatives and agency administrators or volunteering skilled or unskilled labor for advocacy).

    I have not been able to have much of a social life while sick, so I have lost touch with most people. I am trying to recultivate a few old friendships; but I think the point has come where I'm just going to put aside 'pride' and 'etiquette' and send out a mass email to everyone in my addressbook and messages to all social-network 'friends' to help out (by donating to WPI).

    I will explain that they may not have spoken to me in years or even remember me but, this is the situation and please help. This is not the most comfortable thing to do, but if pwME did this with all their contacts, to just be "shameless" in asking for donations to the best orgs (which to me right now is WPI) I think we could make a lot faster progress. It can't hurt and who knows, it could help a lot. I don't follow the WPI fundraising threads, so apologies if this is an old idea (worth a try anyway, though, imo).

    If you want to be a 'shameless' advocate for ME and our best ME orgs, please post here and we all can have a conversation! It would be exciting and fun to reconnect with old acquaintences and friends and do some real good for the best ME orgs! It's so frustrating being powerless and seemingly unable to change things fast enough; this could be a refreshing antidote.

    Also think especially about what friends or acquaintences or even tangential connections you have to people who may be able to help with influence, expertise, money or other support, including a referral to someone they know who might be able to help.

    Do you have any connection, even tangentially, to people who might be able to help? For example, I plan to contact people in positions of influence who are friends of friends, professors I had many years ago, active in volunteer organizations I used to be involved in or even people who just went to my high school. Many may ignore me, but it will be worth it even if I just help educate a few people a bit.

    Do you have any (even remote) connection to:

    Medical:
    - medical doctors (especially those who like to publish or are involved in medical 'societies' such as AMA), med school professors, administrators or board members, teaching hospital administrators or board members, biomed scientists, psychologists or
    - drug company execs.

    Media:
    - Reporters, press and journal editors and publishers, tv or radio execs, documentary filmmakers or producers, film students looking for a documentary project, bloggers
    - celebrities or anyone else who has their own "tribe" of fans, followers, listeners or readers, or
    - health PR people,

    Government:
    - Members of congress, congressional staffers, government health agency administrators, health care lobbyists, people with political favors to cash-in, or,
    - if you live in a state with a senator or a district with a representative on a committee which budgets NIH and CDC, anyone (they can forward emails and sign petitions to the Senator or Rep and/or accompany you to a meeting with a congressional staffer for a show of support).
    [I wlll post here later which states and districts those are].

    Non-profit:
    - Directors or officers of charitable foundations, current or potential donors (esp., but not necessarily wealthy), activists-at-large, fundraisers.


    Let's talk about how to contact them and what to say and cheer each other on here!


    AIDS ACTIVISTS:

    Someone (Marty?) has posted to ACT-UP forums and contacted ACT-UP NY. I think long-time AIDS activists who are bored now that there's nothing to do (ok, that's an exaggeration, but you know what I mean) would be very helpful to us.

    Does anyone know any AIDS activists they can contact?


    ACTIVISTS FOR OTHER DISEASES:

    Activists for other diseases could help us with subject-matter knowledge; eg how to lobby NIH and Congress for change and funding on a disease.

    Alliances with activists for similar and neglected diseases, such as FM, MCS and MS, could be especially helpful. PANDORA and CAA have done a bit of this. (btw, I don't hear that much about FM activism even though there are about 4 times as many pwFM as pwME and they seem to be similarly neglected and persecuted. Wonder why this is.)

    A potential challenge of dealing with activists for other diseases is that they may feel in competition with us for a share of NIH and public attention and dollars, so that might inhibit their cooperation.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This may be obvious, but I think these great trailers for What About ME? are the most powerful way to get the idea across to people unfamiliar with the whole ME situation. I include links in emails I send people:

    http://vimeo.com/10536172
    http://vimeo.com/12284015
  6. ukxmrv

    ukxmrv Senior Member

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    I tried the Terrence Higgins Trust in London but they were unwilling to help. Saw the Actup thread that Jim started for his protest. We don't have an Actup chapter in London any longer. When I was a member many years ago, they were unwilling to accept another disease as they wanted to focus on what were their immediate priorities. Not sure how many old AIDS activists would be interested enough to help in any meaningful way.

    This is a great thread. I'm very isolated now but have been working my contacts for years.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    ukxmrv, thanks so much for continuing to reach out to the wider 'community'!
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't read the WPI fundraising threads. Anyone know of anyones with good advice on soliciting donations from friends, family and civilians? If I don't hear I will check on my own at some point.
  9. ukxmrv

    ukxmrv Senior Member

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    There are people asking for donations for their birthday's (WPI fundraising). Mainly on Facebook.

    p.s. In the UK we also tried the "Human Rights" organisations and things like Mdecins Sans Frontires (Doctors Without Borders
    http://www.msf.org.uk/

    p.p.s. so many PWME seem to have close relatives in medicine and these people in particular are being abandoned by them/families.
  10. Evangelina

    Evangelina

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    I think there are some things we can do inexpensively that would help focus people.

    First of all - we need a famous spokesperson.
    What about sending autograph requests to your favorite movie / tv stars and including a letter about your me/cfs and how tv / movies are the only thing you can do? I have done this and at the very least have gotten some fun autographs. Maybe some star will have a family member with cfs/me and be willing to help. They won't unless we ask!

    Next - wear awareness bracelets. Individual bracelets can be ordered at 24hourwristbands.com. I just did this. I ordered 6 blue wristbands with ''Solve CFS/ME" engraved on the band. (Our color is blue.) You can order as few as 1 wristband and as many as you want.

    Produce youtube videos. Make them funny - people will watch funny. If anyone has any songwriting skills - produce a perky cfs/me song and maybe our song will be as big as the Numa Numa song...You never know!

    Connect the dots. Since many cfs/me patients eventually end up with cancer talk w/ cancer fundraisers etc.
    WillowJ likes this.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think these are good ideas. I put most of them up at the end of the first post where I will keep a list of ideas.

    I agree Youtube is definitely important. Funny is good, yes. Most of youtube views are in the nature of taking a few minutes break from work, so a lighthearted funny vibe is very good. Also I think originality (and brevity) can get eyeballs.

    The birthday WPI donation idea is really great. Thanks for reminding me about that.

    The cancer orgs, esp. ME related cancers- specific leukemias and lymphomas are important for us to contact and motivate/ make our case. People with a specific interest that would be benefited by funding XMRV and/or ME. This interest by cancer orgs has started to develop very slowly as I understand it. Important to push it along.

    More generally saying, as does the "What about ME?" trailer and Mary Schweitzer, "Why should you care? Because you (blood recipient, military personnel, sexually active person or just general member of the public- if airborne or in vaccines) and your child could be next."

    The cancer and 'you could get it too' ideas is along the lines of what i, at least, am thinking about in this thread- there has been talk and people taking action to raise awareness (with socks, bracelets, t-shirts and vids etc.) which are very important. What I'm thinking about here is how to get to the next step of actually getting real help from healthy people- cold hard money and cold hard advocacy. This is probably going to be very challenging to do but I really think it's our only real hope. We can't do it alone.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Fundraising info sources

    fwiw, here are some apparently good books on fundraising. I realize this isn't everyone's cup of tea to read a whole book on a topic like this, but I like to get books and read and look them over since I hate staring at the computer screen so I hate reading on the web. They all are supposedly good; I got the first one because it is cheapest.

    That said, does anyone know any good websites with good info on how to solicit donations/ fundraise in case anyone's interested?

    Are there any sample fundraising letters for WPI out there?


    Books on Fundraising:

    Writing for a Good Cause: The Complete Guide to Crafting Proposals and Other Persuasive Pieces for Nonprofits [Paperback]
    Joseph Barbato (Author), Danielle Furlich (Author)
    4.8 out of 5 stars (12 customer reviews)
    $11.55
    http://www.amazon.com/Writing-Good-Cause-Persuasive-Nonprofits/dp/0684857405/ref=pd_sim_b_30

    Effective Fundraising for Nonprofits: Real-World Strategies That Work [Paperback]
    Ilona Bray J.D. (Author)
    4.7 out of 5 stars (33 customer reviews)
    $18.66
    http://www.amazon.com/gp/product/14...&pf_rd_t=101&pf_rd_p=470938631&pf_rd_i=507846

    How to Write Successful Fundraising Letters, with CD (The Jossey-Bass Nonprofit Guidebook Series) [Paperback]
    Mal Warwick (Author)
    4.8 out of 5 stars (16 customer reviews)
    $24.39
    http://www.amazon.com/gp/product/0787999083/ref=ox_sc_act_title_4?ie=UTF8&m=ATVPDKIKX0DER
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think fundraising may be the most productive thing we can do in relation to pw/oME. 'Differentiating' our cause from the solicitation 'clutter' is important, imo. Here's a great example; the campaign to cure compact crampomitosis, below. It is attention-getting and funny/whimsical.

    I think doing something like this to raise money for WPI or your favorite org would be really effective because it 'leaps over' our biggest barrier: confusion and doubt about ME. If you get someone's attention and then make them smile they will probably be able to relate to us more, than if they just get a plea for money for an illness that they may not be 'sure' about (because they've been lied to by the charlatans).

    http://www.causes.com/causes/570191-cure-compact-crampomitosis/about
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Lisa Petrison, who has a PhD in marketing has managed to pique the interest of the leadership of Rotary International in ME. Apparently it is possible to interest 'disinterested' people who can make a difference!! Thank you so much Lisa!:

    WillowJ likes this.
  15. WillowJ

    WillowJ Senior Member

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    a person to add to the list: a Filipino Senator, Miriam Defensor-Santiago, said to have CFS:

    http://www.gmanetwork.com/news/stor...ittle-dizzy-miriam-leaves-impeach-trial-early

    the article continues, discussing the impeachment trial of the Philippine Supreme Court Chief Justice Renato Corona.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks Willow. last time i checked i could not now add to the list because of a lock-down on editing posts after a certain time period. i will add it to the list on the other forum.

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