1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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2012 Chase Community Giving Contest - Voting, Promoting (Ways to Help!)

Discussion in 'Fundraising' started by frenchtulip, Sep 3, 2012.

  1. frenchtulip

    frenchtulip Senior Member

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    Our wonderful advocate-artists have generously given of their time and talent to create three contest posters for our use in the Chase contest. Here is the first one. They have also provided some ideas for using the posters:

    - organisations can pin the pictures to the top of their Facebok page - so that any person coming the to their page will always see it
    - organisations can re-share the pictures from their own page as many times as they like and can include new text every time (sharing the picture repeatedly will ensure it appears in people's newsfeeds more often)
    - once the picture is on the page, the text description that goes with it can also be edited before re-sharing
    - paste pictures into the event for Chase
    - send them as attachments with the voting reminders

    We also have permission to use the posters here on Phoenix Rising, on Twitter, or anywhere they could do some good.
    The other two posters will be unveiled soon.
     

    Attached Files:

  2. frenchtulip

    frenchtulip Senior Member

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    Here is the second contest poster created by our advocate-artists. They have also provided some ideas for using the posters:

    - organisations can pin the pictures to the top of their Facebok page - so that any person coming the to their page will always see it
    - organisations can re-share the pictures from their own page as many times as they like and can include new text every time (sharing the picture repeatedly will ensure it appears in people's newsfeeds more often)
    - once the picture is on the page, the text description that goes with it can also be edited before re-sharing
    - paste pictures into the event for Chase
    - send them as attachments with the voting reminders

    Another poster will be revealed tomorrow!
     

    Attached Files:

  3. frenchtulip

    frenchtulip Senior Member

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    The advocate-artists have also created a number of beautiful posters to help explain ME/CFS and have received very positive feedback. Some who have responded have indicated they had no idea what a devastating illness ME/CFS is and have even offered to help fund-raise. These posters can be used as powerful educational tools in asking others to vote. Here are a few of the posters. If you are on Facebook, there are many more on the ME Awareness: Words and Pictures page at: https://www.facebook.com/MEAwarenessPics?ref=ts

    (The "Imagine if" poster - original version and revised version - has been shared over 500 times already!)
     

    Attached Files:

    Merry likes this.
  4. frenchtulip

    frenchtulip Senior Member

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    The ME (ME/CFS) Fundraising Group is planning to post a poll tomorrow on their Facebook page at: http://on.fb.me/twyeN3 to determine which of the ME/CFS nonprofits competing in the Chase Contest may have the best chance of winning. Because of a fewer number of votes this year allowed to each voter and the fact that nonprofits with operating expenses of up to $10 million are allowed to compete, we believe the competition will be more challenging for our ME/CFS nonprofits. Therefore, we believe it is necessary to have a voting strategy to help our ME/CFS community win.

    As far as we have heard (or judging by their completed profile pages), it appears that eight of our 24 nominated nonprofits are planning to compete in the contest. These nonprofits are: Phoenix Rising, Rocky Mountain, Wisconsin, New Jersey, OFFER, Enterovirus Foundation, NIDA, and HHV-6 Voundation. If you know of any others, please let us know.

    If you are not a member of Facebook, you could set up an account. If you are a Facebook member but not a Fundraising Group member, you could ask to join to take the poll.

    If the leaders of the competing nonprofits come up with a voting strategy, that will be given priority over the poll. We desperately want some of our nonprofits to win and feel very strongly a strategy is imperative for us to win. Thanks for your help!
    ----------------------------------------------
    Here are the mission statements of the eight nonprofits that we think are planning to compete and have their profile pages completed. You can also check their websites to learn more. ROCKY MOUNTAIN CFS ASSOCIATION INC
    AKA: Rocky Mountain CFS/ME and FM Associaition
    7020 E Girard Ave, Suite 207, Denver, CO, 80224
    EIN: 84-1178034
    Causes: Health
    Mission
    The Rocky Mountain CFS/ME & FM Association is a 501(c)(3) non-profit organization for those affected by Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME), and Fibromyalgia (FM). Our mission: Advocate for research Awareness for understanding Educate for patient care Support for hope
    Find this Charity online www.rmcfa.org
    Donate: www.rmcfa.org/donations.html
    www.facebook.com/pages/RMCFA-Rocky-Mountain-CFS-ME-FM-Association/162296707138242
    twitter.com/rmcfaorg
    Charity Administrator
    Mike Munoz

    Wisconsin Chronic Fatigue Syndrome Association, Inc.
    AKA: Wisconsin ME and CFS Association, Inc. ( 1987)
    733 Lois Dr, Sun Prairie, WI, 53590
    EIN: 39-1614649
    Causes: Health
    Mission
    In 1987, Wisconsin pledged to assist patients and their families. In 2012, the needs of the majority of our underserved patient population have changed. People sick with ME and CFS who lack computer access and /or skills to use a computer, may be denied the very basis of hope, that is, a proper diagnosis, better medical care, and knowledge about promising research. Mission: The CO-OP for Services is a toll free health information access number.Trained responders briefly talk with people who are ill, secure a mailing address, and send it to a designated confidential e mail address. WIsconsin will send out a package of good medical information about CFS. Goals: To locate the large number of undiagnosed and misdiagnosed CFS patients To give patients with no Internet access a way to get medically approved information. SEPT 1 start up: Health Information CO-OP for Services Toll Free: 1-855-878-5555
    Find this Charity online www.wicfs-me.org
    Charity Administrator
    PAT FERO

    NEW JERSEY CHRONIC FATIGUE SYNDROME ASSOCIATION INC
    AKA: NJCFSA
    PO Box 477, Florham Park, NJ, 07932
    EIN: 22-3367433
    Causes: Health
    Mission
    The primary purpose of the New Jersey Chronic Fatigue Syndrome Association, Inc is to disseminate information about CFS to patients, caregivers, the health care community and the public, organize and maintain patient support groups, promote research into the cause, method of treatment, diagnosis and cure of the disease
    Find this Charity online www.njcfsa.org
    Donate: www.njcfsa.org/donate
    www.facebook.com/#!/pages/New-Jersey-Chronic-Fatigue-Syndrome-Association-Inc-NJCFSA/141665745869451
    twitter.com/njcfsa
    Charity Administrator
    Patricia LaRosa

    ENTEROVIRUS FOUNDATION INC
    268 Bush Street 4044, % Rachel Landphere, San Francisco, CA, 94104
    EIN: 26-3513934
    Causes: Health
    Mission
    "The scariest disease you've never heard of..." Help us END EV! According to the CDC there are 50 million enterovirus infections annually in the US and an estimated one billion globally. They are as easy to catch as the common cold. Enterovirus infections such as Coxsackie, EV71, and Echovirus can trigger diseases such as juvenile diabetes, viral myocarditis, viral meningitis, Hand Food and Mouth Disease, pancreatitis, and approximatley 26 disease associations that we know of. There is no treatment. EVF is committed to providing funding for: •Research • Finding antiviral medications that work • Improving diagnostic testing • Accelerating communication across the research and medical communities, including clinical education about the latest in diagnosis and treatment • Raising public awareness about enteroviruses and their role in disease.
    Find this Charity online www.EnterovirusFoundation.org
    Donate: npo1.networkforgood.org/Donate/Donate.aspx?npoSubscriptionId=1000786%22%3e%3cimg
    www.facebook.com/EVForg
    Charity Administrator
    Rachel Landphere

    NEURO IMMUNE DISEASE ALLIANCE INC
    AKA: NIDA
    29302 Laro Drive, Agoura Hills, CA, 91301
    EIN: 27-2861703
    Causes: Health
    Mission
    A specific list of high-priority projects ( The OMI-MERIT Initiative), focused on finding diagnostic tools and treatments, including a Rituxan clinical trial, was created and agreed upon by a global consortium of world renowned researchers and clinicians including, in alphabetical order, Drs. Lucinda Bateman, Yenan Bryceson, Ron Davis, David Dreyfus, Oystein Fluge, Mady Hornig, Nancy Klimas, Andy Kogelnik (Chair), Charles Lapp, Jay Levy, Alan Light, Kathleen Light, Sonya Marshall, Mauro Malnati, Olav Mella, Jose Montoya, Dan Peterson, Simone Pensieroso, Ila Singh, Carmen Scheibenbogen, Charles Shepherd, and Rozamond Vallings. NIDA is collaborating with the Open Medicine Institute (OMI) and all monies raised as part of the Chase-sponsored contest will support the OMI-MERIT Initiative. The goals are to fast-track answers in diagnosis and treatment. For more information please visit www.openmedicineinstitute.org.
    Find this Charity online www.nidalliance.org
    Donate: www.nidalliance.org/ways-to-help.html
    www.facebook.com/pages/Chronic-Fatigue-Syndrome-Support-CFSME/273240696061761
    Charity Administrator
    Linda Tannenbaum

    ORGANIZATION FOR FATIGUE AND FIBROMYALGIA EDUCATION AND RESEARC
    AKA: OFFER
    1002 E South Temple Ste 408, Salt Lake Cty, UT, 84102
    EIN: 87-0687610
    Causes: Health
    Mission
    Our mission is to offer hope to individuals who are affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS) and Fibromyalgia (FM) by providing and supporting education, advocacy, research and networking for patients and families. We will accomplish this mission by • Educating patients, families, physicians and community members; • Changing perspectives within community systems, families, governments, public insurance companies, and providers through advocacy and greater awareness; • Supporting ongoing CFS and FM research and disseminate current, accurate information to patients, providers, and other interested parties; • Improving community resources for patients with CFS and FM, by identifying a network of healthcare providers, social workers, and other professionals who are informed, compassionate, qualified, knowledgeable and affordable.
    Find this Charity online www.offerutah.org/
    Donate: www.offerutah.org/donations.htm
    www.facebook.com/offer.utah.3
    twitter.com/OFFERUtahorg
    Charity Administrator
    Paul Shepherd

    PHOENIX RISING AN NEID CORPORATION
    3709 Beaver Creek Dr, Raleigh, NC, 27604
    EIN: 27-3313361
    Causes: Health
    Mission
    Phoenix Rising is a non-profit corporation dedicated to providing people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) information and online programs they can use to enhance their health and well-being.
    Find this Charity online phoenixrising.me
    Donate: phoenixrising.me/donating
    www.facebook.com/PhoenixRisingMECFS?ref=hl
    Charity Administrator
    Karen Luoto

    HHV-6 FOUNDATION
    1253 Coast Village Rd Ste 105, Santa Barbara, CA, 93108
    EIN: 20-1043981
    Causes: Health
    Mission
    The HHV-6 Foundation is a non-profit entity founded to encourage scientific exchange between investigators and to promote scientific and clinical research on the under-appreciated viruses HHV-6A and HHV-6B. The Foundation sponsors international conferences, supports scientists and clinicians seeking to clarify the role of the two HHV-6 viruses in disease, and acts as a resource for patients suffering from HHV-6 infection/reactivation worldwide.
    Find this Charity online www.hhv-6foundation.org
    Donate: www.hhv-6foundation.org/support-us
    www.facebook.com/Hhv6Foundation
    Charity Administrator
    Jill Chase
     
  5. frenchtulip

    frenchtulip Senior Member

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    Here is the third contest poster created by the advocate-artists for our use in the Chase Contest!
     

    Attached Files:

  6. frenchtulip

    frenchtulip Senior Member

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    To help determine a voting strategy in the Chase Contest, two polls have been set up at: https://www.facebook.com/events/442305962477809/?notif_t=plan_user_joined
    Please cast a vote for two different ME/CFS nonprofits.


    If you are not a member of Facebook and wish to vote in the poll, you can set up a Facebook account. (That will also entitle you to two votes in the Chase Contest and make you eligible to try to earn a third "bonus" vote.) A new Facebook page was set up for the poll and it is open. You do not have to ask to join.
     
  7. Nielk

    Nielk

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    Bumping this to remind members to take this important poll.

    This is time sensitive since the contest starts tomorrow!
     
  8. Aileen

    Aileen Senior Member

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    Has anyone contacted anybody at the 8 charities (well, we know about PR;)) to see how hard they are willing to work to win the money? That is critiical.
     
  9. frenchtulip

    frenchtulip Senior Member

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    I think a really, really important thing is to use the CCG app shared on a ME/CFS friend's timeline or newsfeed to cast a vote and give them a bonus vote. Leave a message there on the friend's page, if possible, that you have used their app, so nobody else will use it (and waste potentially a good bonus vote, which could go to someone else).


    The two top vote-getters in the poll held on Facebook were NIDA and Phoenix Rising. It appears to be a tie. NIDA received 20 votes; Phoenix Rising received 21, but one person voted twice for PR so one vote was subtracted. You may wish to consider voting for one or both of the org's or vote for one of them and cast your other vote for a nonprofit of your choosing. Thanks for your help!
     
  10. Nielk

    Nielk

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    I agree that if possible, it is vital to try to take advantage of this "bonus" vote by using this CCF app through Facebook. It will increase your voting power by 50%.

    If anyone doesn't understand the voting process, please state your questions here and we will try to clarify.

    This year, each person gets only 2 votes for the whole contest period through Facebook. If one uses the "bonus vote", it makes it three. In addition, if one is a Chase customer, one can get two votes through Chase on-line.

    If you are thinking "why should I get involved with this?", I would say this is such a unique opportunity that it would be a real shame to pass up.

    With just a few clicks of your mouse (which you are touching right now anyway), you can help one or more of these ME/CFS organizations earn much needed funding. This is really an easy one. You will feel good knowing that you did your part.
     
  11. Aileen

    Aileen Senior Member

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    There is a very important catch though. When casting your vote through someone else's app, they will only get a bonus vote IF AND ONLY IF "the receiving party uses the sharing Facebook users shared link to enter the CCG Application and vote during that visit" (in other words, you can't click on the link and then decide to vote later because it's confusing --- YOU MUST VOTE RIGHT THEN!!)
    for details of voting rules click heresee post #43.
     
  12. frenchtulip

    frenchtulip Senior Member

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    Thank you, Aileen! This is superb info here on the bonus vote!!! I have accessed the voting pages of the 8 org's in various ways--a couple of time's through the link on Cort's page, but I haven't voted. So I can't give Cort a bonus vote. I have also gone directly to the voting pages at CCG to check votes. Can I still vote through a different friend's link and help the friend get a bonus vote? If not, how about if I delete the CCG app that has been on my page for several years and then access CCG through a friend's page? Thanks for your help!
     
  13. Aileen

    Aileen Senior Member

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    Cort, and everyone else, only gets ONE bonus vote. If someone has already given him one, then you are throwing away a precious bonus vote. Therefore, I strongly suggest to everyone that they PICK A PARTNER before voting. The 2 of you can give each other your bonus votes.
    And you need to decide who is going to vote for which charity. I'm not sure you can give each other the same link ...If you mess this up, you CANNOT go back and correct it. :(

    Who to partner with?
    Your spouse
    a sibling
    a child (must be 13 years old)
    a friend
    a neighbour
    an aunt/uncle/cousin
    a co-worker ... and perhaps some others at work might pair up too?
    as a last resort - because we want as many non-patients helping as possible, another patient (eg on PR)
     
  14. frenchtulip

    frenchtulip Senior Member

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    Thank you very much, Aileen!
     
  15. frenchtulip

    frenchtulip Senior Member

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    Please be aware that searching for our org's at the Chase site can be tricky. Phoenix Rising is listed as Phoenix Rising An NEID Corporation. If you just search for Phoenix Rising, several of them pop up. One person voted for the wrong PR.
     
  16. Anne

    Anne Senior Member

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    I think more the most important factor (more important than the complicated bonus votes) is to get as many of our Facebook friends as possible to vote. If all of us can engage 20 people, or 50, that's a lot of votes. I've sent out the message below to all my Facebook friends. Posting it here in case you'd like to do something similar. (How to reach all your friends? - see the next comment.)


    Friends, please help us raise money for ME/CFS research by voting in the Chase Community Giving Contest. Previous Chase contests have resulted in $170,000 to ME/CFS research – this time we can win some more! Help us by voting – it only takes a few minutes.

    Vote before Sept 19. Each person has two votes (plus a possible bonus vote, see below). Here’s how:

    NOTE: The Chase FB site is overloaded at times, so if it behaves weirdly, please try again later!

    1. Go to Chase Community Giving’s FB page and click “Like” (if you haven’t done this previously).
    https://www.facebook.com/ChaseCommunityGiving?ref=ts

    2.
    Go to this page:http://fb.chasegiving.com/charity/view/ein/27-2861703

    (Or type NIDA in the box “"Search charities".)
    "Neuro Immune Disease Alliance" will appear. Click "Vote". At the question "Allow" or "Allow App", click Yes.

    3. Once you have voted, click the "Like" button and - IMPORTANT - write a short message to post it on your timeline. If someone then follows the link and votes you get a bonus vote.
    4. Then go to this page:http://fb.chasegiving.com/charity/view/ein/27-3313361

    (Or type NEID in the box "Search Charities".)
    "Phoenix Rising, an NEID corporation" will appear. Click “Vote” and then click “Like” and write a short message for your timeline.

    5. Send this message on and ask your friends to vote too.

    6. If you get a bonus vote, you can use it to vote for NIDA or Phoenix Rising NEID again, but you have to wait a while.

    The top 196 organizations will receive $10,000 each.

    Many thanks!
     
  17. Anne

    Anne Senior Member

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    How to send a message to all your Facebook friends:
    Two ways (if I understand this correctly, no FB guru myself):

    1. You can only send normal messages to 20 people at a time. Open Facebook in two browser windows simultaneously, and in one window, go to Messages; in the other window, go to the list of your friends. Now use the friends list to decide which friends you want to message - and use the Message window to create a message to the first 20 that you see. Then make a second message for the next 20, and so on.

    2. Or, you can create an event - that opens up a possibility to send a message to all your Facebook friends, see


    A good suggestion (posted here somewhere) was that an effective way to get your friends to actually vote is to chat to those that are online and ask them "in real time". That way you can be there for questions which might arise, too.
     
  18. Aileen

    Aileen Senior Member

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    I am trying to write up a step-by-step guide for the brainfogged who are unfamiliar with computers. This means giving them every little detail. I need to know, when you are voting:
    you just voted for say, PR and now you want to put a link on your facebook page to get a bonus vote so you click on "like" under the photos of the people who voted for PR. A box comes up: what does it say? do you have to click on something? if so, what and where is it?
     
    frenchtulip likes this.
  19. Anne

    Anne Senior Member

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    A box comes up that says "Thankyou for voting - Share the love and get an extra vote". The easiest way to move on to get the bonus vote is to then click the "Like" button that you can see on the left hand side and - IMPORTANT - write a short message in the box that then appears. This will post the link and your short message on your timeline. If someone then follows the link and votes you get a bonus vote.

    If you don't write a message the link will not be as visible on the timeline (it will be hidden among your "Likes", not be posted as a separate post that shows up in people's news feed and is clearly visible on your timeline).
     
    Nielk likes this.
  20. Aileen

    Aileen Senior Member

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    Thank you Anne!
     

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