1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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Article: Two Weeks for $250,000 (or more) for CFS Support Groups with Chase Community Giving (Nov 8

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 4, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. frenchtulip

    frenchtulip Senior Member

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    Does anyone have an email address for Dr. John Chia? I am trying to get info to him. The Enterovirus Foundation Profile Page at Chase needs to be completed. It seems Chase is strict about that. A couple of days ago, I did leave a message at the Enterovirus Foundation website and asked on their Facebook page to please message me. But haven't heard. Thanks.
  3. Cort

    Cort Phoenix Rising Founder

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    Every day every one can go to the Profile pages of each of the orgs and then like, click on the Facebook and twitter buttons to get the word out about them.
    WillowJ likes this.
  4. WillowJ

    WillowJ Senior Member

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    Thanks for this! :Retro smile:
  5. Cort

    Cort Phoenix Rising Founder

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    This is an easy way to win ALOT of money for alot of cash starved organizations. I hope the CFS community can get behind this.
  6. Cort

    Cort Phoenix Rising Founder

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    IACFS/ME on Winning Chase

    On behalf of the new ME (ME/CFS) Fundraising Group on Facebook at https://www.facebook.com/groups/221024774616166/ has been getting replies from ME/CFS non-profits, Faith has been sending out questionnaires to non-profits eligible for Chase.

    IACFS/ME RESPONDS

    What is the focus/purpose of your nonprofit--research, advocacy, education, support? Please describe briefly.

    Founded in 1990, the IACFS/ME is a multidisciplinary organization of scientists, clinicians, educators, and patients dedicated to the study, care and treatment of individuals with CFS/ME and fibromyalgia. Our advocacy efforts include regular presentations on timely issues at the DHHS-sponsored CFS Advisory Committee meetings in Washington, DC. In addition, we have posted position statements on critical issues of interest to the CFS/ME community, including the PACE trial, DSM5, the hold on MLV studies, and leadership of the CDC CFS program. Our educational efforts have focused on workshops for clinicians held at our more recent international meetings (9/2011: Ottawa; 3/2009; Reno). These workshops have enrolled hundreds of professionals who want learn more about diagnosis, treatment and ongoing clinical care of patients with CFS/ME.

    What projects/areas has your organization funded?

    IACFS/ME sponsors biennial international conferences to stimulate research and collaboration in the study of CFS/ME and fibromyalgia. This open scientific forum includes over 500 biomedical and behavioral professionals who study these illnesses with respect to causation, persistence, and treatment.

    Currently, we are funding an ongoing effort (over the past 18 months) to develop a concise, user-friendly, and evidence-based CFS/ME Primer for physicians and other health practitioners that is expected to be completed by the end of 2011. Fred Friedberg chairs the primer committee of 12 respected CFS/ME professionals.

    In the last two years we have regularly published a quarterly peer review journal (Bulletin of the IACFS/ME) and a Newsletter (3x a year) which contain recent scientific studies as well as abstracts, opinion pieces, announcements, and other information of interest to the CFS/ME professional and patient communities.


    About how many members does your group have? (if applicable)

    Currently, 400.

    How would you plan to use prize money?

    The prize money would be used to help support these specific goals: (1) funding medical students and young investigators to attend our next international conference who may be considering a career in the area of CFS/ME; and (2) Design, production and dissemination of hard copies of the new Physicians Primer for CFS/ME to primary care doctors and other health practitioners.
  7. Cort

    Cort Phoenix Rising Founder

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    On behalf of the new ME (ME/CFS) Fundraising Group on Facebook at https://www.facebook.com/groups/221024774616166/ has been getting replies from ME/CFS non-profits, Faith has been sending out questionnaires to non-profits eligible for Chase.

    MASS CFIDS Responds

    What is the focus/purpose of your nonprofit--research, advocacy, support? Please describe briefly.

    • Advocacy on behalf of patients: in Massachusetts and at the federal level (in conjunction with other CFS organizations where possible)
    • Outreach and education: to health care providers within Massachusetts; to other patient support organizations, for example, hospitals and wellness clinics; to the patient community and the public
    • Support: to patients and their families; direct services to patients information line, physician referral, disability counseling, and support groups


    What projects/areas has your organization funded?

    • Conferences: We present nationally-known speakers at our educational conferences, and have them professional videotaped for viewing on our website. Patient groups in Norway, Japan, Germany and Spain have translated/subtitled these talks for their local communities. Website: Our website is rich in content, including our Disability booklet available for free download.
    • Information line and website Contact Us: volunteers provide general information, support, physician referral, and disability counseling to patients who contact us through these channels.


    About how many members does your group have? (if applicable)


    85 members at present; 880 on email newsletter list. We are currently running a membership drive.

    How would you plan to use prize money?

    To support our educational conferences and start new initiatives.
  8. Cort

    Cort Phoenix Rising Founder

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    On behalf of the new ME (ME/CFS) Fundraising Group on Facebook at https://www.facebook.com/groups/221024774616166/ has been getting replies from ME/CFS non-profits, Faith has been sending out questionnaires to non-profits eligible for Chase.

    the National CFIDS Foundation Responds

    What is the focus/purpose of your nonprofit--research, advocacy, support? Please describe briefly.

    Our purpose is to be able to no longer be a 501-(c) (3) charity having had the cause and a treatment or cure found for CFIDS/ME.

    What projects/areas has your organization funded?

    Too many to list! Some: Slow degredation of part of the immune system (STAT-1) that limited the causes of the disease, biomarker for autoimmune diseases (Hokama, 2008) showing CFIDS/ME to be an autoimmune disease, ruling out PIV-5 and others as causative, anesthesia protocol so lives are not endangered.

    About how many members does your group have? (if applicable)

    Between 2,000 and 4,000 (new totals not yet available)

    How would you plan to use prize money?

    100% to fund research. We spend no money for employees, etc.
  9. Cort

    Cort Phoenix Rising Founder

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    On behalf of the new ME (ME/CFS) Fundraising Group on Facebook at https://www.facebook.com/groups/221024774616166/ has been getting replies from ME/CFS non-profits, Faith has been sending out questionnaires to non-profits eligible for Chase.

    NEW JERSEY CFS ASSOCIATION RESPONDS


    What is the focus/purpose of your nonprofit--research, advocacy, support? Please describe briefly.

    The NJCFSA focuses on patients. It mission includes supporting patients and their families, disseminating reliable information about the illness, facilitating communication between healthcare providers and patients, and promoting research into the causes, methods of diagnosis, treatments, and cure of Chronic Fatigue Syndrome (CFS).

    What projects/areas has your organization funded?

    NJCFSA sponsors an annual Medical Student Scholarship, a HS Scholarship, a Child/Teen Emergency Relief Fund, research grants, and more.

    About how many members does your group have? (if applicable)

    A little below 300, plus 380 followers on Facebook and 221 online members of one of our support groups. How would you plan to use prize money?

    Toward endowing the two scholarships, replenishing the Child/Teen Emergency Fund and covering expensing related to a pediatric manual.
  10. frenchtulip

    frenchtulip Senior Member

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    On behalf of the new ME (ME/CFS Fundraising Group on Facebook at https://www.facebook.com/groups/221024774616166/, I have been sending out questionnaires to non-profits eligible for Chase and getting replies from ME/CFS non-profits.

    THE ROCKY MOUNTAIN CFS-FM-ME ASSOCIATION RESPONDS

    What is the focus/purpose of your nonprofit--research, advocacy, support? Please describe briefly.

    About RMCFA: We are celebrating our 25th year and been a 501(c)3 since 1991. RMCFA is a charter member of both the Coalition 4 ME/CFS and Fibromyalgia. Our mission is Advocate for research, Awareness for understanding, Educate for patient care, Support for hope for patients with ME/CFS and fibromyalgia and their families.
    Website: http://www.rmcfa.org/index.html
    Facebook: https://www.facebook.com/pages/RMCFA-Rocky-Mountain-CFS-ME-FM-Association/162296707138242?v=wall
    Twitter: http://twitter.com/#!/RMCFAorg YouTube: http://www.youtube.com/user/rmcfaorg

    What projects/areas has your organization funded? We have many programs but here are a few:
    We put out a monthly/semi monthly newsletter (enews) - http://www.rmcfa.org/2011_9_22_enews.html and archives - http://www.rmcfa.org/enews.html which outlines rmcfa programs, research, activities and community news We have monthly meetings that vary from support to educational - archive - http://www.rmcfa.org/eventarchive.html We have a patient support line - http://www.rmcfa.org/contactus.html and patient support through email - link@rmcfa.org

    About how many members does your group have? (if applicable) RMCFA is involved in patient support locally, nationally and internationally through the above various programs. We do not have "memberships" but we have 500+ on our email list and draw around 20-50 people to our events. Our programs serve patients and their families throughout the world (website, social media and email/phone) We have been instrumental in both the DSM-5 and ICD-10-CM initiatives brought by the coalition 4 ME/CFS - http://coalition4mecfs.org/News.html. and current petition - http://www.change.org/petitions/don...o-the-neurological-chapter-6-in-the-icd-10-cm Just this year we have also teamed up with Pandora (and many other orgs) on the CDC initiative and petition - http://www.change.org/petitions/tell-cdc-to-change-their-mecfs-research and MCWPA activities including the Washington post ad and 30 second PSA (see on RMCFA youtube) and a sponsor of "Speak up about ME" (young people with ME) http://www.speakupaboutme.org/thanks just to name a few

    How would you plan to use prize money? We are all volunteer and 98% of donations proceeds go to programs. Use of donations, grants and giving contests are mandated by the board of directors. It is safe to say that Chase giving proceeds will go to the above programs and allow us to open a few new ones over many years to come We work with many in the ME/CFS and Fibromyalgia medical community to improve the quality of life for patients.
  11. Dolphin

    Dolphin Senior Member

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    Exciting stuff. I think I will wait a few days to vote to see who looks like they have a chance. It's not like Vivint with daily voting so there's no particular rush.
  12. Cort

    Cort Phoenix Rising Founder

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    The best thing to do in the meantime maybe is to use the f, t and like buttons on each orgs profile page to spread the word.
  13. frenchtulip

    frenchtulip Senior Member

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    THE CFSKNOWLEDGECENTER RESPONDS

    What is the purpose/focus of your nonprofit--research, advocacy, support? Please describe briefly.

    Please see: http://www.cfsknowledgecenter.com/

    What projects/areas has your organization funded?

    Please see: http://www.cfsknowledgecenter.com/

    About how many members does your group have? (if applicable)

    We have over 3300 registered members and receive over 15,000 visits a month to our websites from people from over 80 countries around the world.

    How would you plan to use prize money?

    The money will be used to support our three websites for those afflicted as well as our ground breaking video projects (see: www.vimeo.com/mecfscommunity).
  14. frenchtulip

    frenchtulip Senior Member

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    Note: NCF requested info on how to withdraw from the contest. If you are wanting to vote for NCF, you may wish to save a vote for them and wait to see if they actually withdraw. If they withdraw, your vote will be lost. Thanks.
  15. frenchtulip

    frenchtulip Senior Member

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    Note: The IACFS/ME is listed at Chase under the old name, American Association for Chronic Fatigue Syndrome.
  16. Nielk

    Nielk

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    I have no clue as to what is happening?
    We should NOT vote yet????
  17. Carryon

    Carryon

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    Thanks to Cort and everyone working so hard to get the vote out. Also, thank you to everyone that has taken the time to vote for RMCFA. I and everyone at RMCFA really appreciate it It is an exceptional opportunity for us.

    Best,

    Mike Munoz
    Executive Director
    Rocky Mountain CFS/ME & FM Association
  18. WillowJ

    WillowJ Senior Member

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    It depends who you are voting for. You have 10 votes, which you will use for 10 different orgs. You are allowed to use them at any time over the next 2 weeks.

    I recommend you not use them all at once, in case there is an org who does better than expected that you later decide you want to support.

    There are some charities who we are not sure yet if they are eligible, and one who is talking about withdrawing. You do not want to vote for those today, because you could waste a vote.

    But there are some orgs who are safe votes today. Frenchtulip and Helen41 posted lists on the other thread (they are updating it there):

    asterisks mine

    So at this point I personally would vote for any I have asterisked.

    I may vote for only one org per day, so I can promote that org on Facebook and Twitter without cluttering up my feeds with a bazillion posts and fatiguing my readers. We can also post notes about one org to the next org's profile.
  19. Cort

    Cort Phoenix Rising Founder

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    Mike worked with non-profits before he got ill.....and as Executive Director of the RMCFSA would really know how to use this money effectively. He, like most of the other leaders of these non-profits, has a large vision of what's possible - if we had the money (and it wouldn't take that much). Please support the RMCFA in Chase!
    taniaaust1 and WillowJ like this.
  20. Cort

    Cort Phoenix Rising Founder

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    The voting is On! I've spent five of my 10 votes - it was a blast actually :). I for sure wanted to get CFSKnowledgeCenter/RMCFSA/Wisconsin/New Jersey and uh oh........brain fog territory oh yes and the AACFS (IACFS/ME) off to a great start.

    I'm holding off a bit because I wonder if we should try to get the FM and CFS groups to support each other.

    They all have between 18 and 26 votes so far. FIrst leaderboard update at 6pm EST

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