ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Two weeks for $250,000 (or more) for CFS Support Groups with Chase Community Giving (Nov 8th-22nd)
Thursday 10 November 2011
$250,000 or More for the ME/CFS Community?????
Is that even possible? $250,000 may be more than all the smaller non-profits ever - put together - spent in their existence - but it is possible and its happening NOW.
Chase Community Giving is at it again. In the first round - for larger non-profits - the ME/CFS Community got the WPI a cool $100,000. Last year the ME/CFS Community won PANDORA 20K.
Small Non-Profits Now - Now Chase is doing a round for smaller non-profits with even more money at stake. With 10 or more CFS non-profits voting for each other the ME/CFS Community could rack in 250K or more - that’s right 250,000 - IF we do this right.
Since the rules of the contest give each person 10 votes but allow them to vote only once for a non-profit we need to all band together and rally each organizations membership to get the word and vote. The Chase contest is, not surprisingly, very competitive and is more competitive this year with fewer winners overall. It will take all of us voting and contacting and supporting each other for two weeks.
What might they do with this money? Provide seed grants to researchers? Small grants have paid off before. PANDORA’s $3,000 grant to Dr. Broderick lead to a $100,000 grant from the CFIDS Association of America which, in turn, lead to a $4,000,000 NIH grant. The Wisconsin CFIDS Association’s grant helped the WPI get their Biobank off the ground. The National CFIDS Foundation’s grants for ciguatera research helped create a new research focus for CFS.
How about hiring professional grant writers to bring in the really big money? Creating a powerful advocacy program that brings patients together to make a difference? Creating a scholarship for medical students? Underwriting a treatment booklet for ME/CFS? Supporting a name change? Providing funds for indigent ME/CFS patients? The possibilities are large.
Last time we did this only PANDORA was organized enough to really get into the race but now we have the chance to make many organizations win - potentially pumping hundreds of thousands of dollars into a cash starved ME/CFS community.
Time: Contest Begins Nov 8th and ends Nov 22nd
BEFORE THE CONTEST
Quick Voting List - Click on each organization to go to their profile page and vote.
(Several non-profits including Phoenix Rising, Vermont CFIDS, OFFER and Simmaron are not eligible because their data was not entered into the Guidestar Database as of 12/31/10. They will be eligible for next years contest.). Rescind and the National CFIDS Foundation (NCF) have asked not to be included. The Martin Lerner Foundation was [sic]
A Deeper Look at the Entrants - Let’s take a deeper look at each of the entrants - each of which has made a difference without substantial funding.
International Association for Chronic Fatigue Syndrome - the voice of the professional ME/CFS community, the IACFS/ME produces the bi-annual International Conferences on CFS research, provides a bulletin, a quarterly newsletter, commentary on CFS research issues. Our professional organization has been like a sleeping tiger; chronically short of money it has the potential to be a real leader in the CFS research community. Let’s get them some funds so they can realize their potential for us.
CFSKnowledgeCenter - Dan Moricoli already easily had the biggest ME/CFS video collection on the web at CFSKnowledgeCenter/MECFS Community Center but he’s taken it one step further and is now, in conjunction with Dr. Nancy Klimas, producing a series of video’s on managing CFS. The CFS Knowledge Center supplies the latest ME/CFS news with its Continuing News Stories section and its weekly updates, has collaborated with Dr. Klimas on several Research Surveys, and has an Expertise Assistance Section with Dr. Hyman. In 2011 the CFSKnowledgeCenter joined the Coalition4ME/CFS.
Check out a video Dan created for the contest
Dan has done all this on basically nothing. What could he do with $25,000 or $100,000 dollars? I would love to find out.
Wisconsin ME/ CFS Association - One of the oldest CFS support groups the Wisconsin ME/CFS Association has a long history of making a difference. The WICFS helped create a state network that ended up including 26 groups, lobbied on the state and federal levels, created the first national repository for CFS samples, hosted the 7th International IACFS Conference, provided $12,000 for the WPI’s Biobank Freezer (and then 5k more later), presented information on CFS budget problems at the federal advisory panel for CFS (CFSAC), provided $3,000 for the Friedman Medical Scholarship, and participated in producing the State of the Knowledg Workshop. In 2011 the WIME/CFS Association joined the Coalition4ME/CFS.
The New Jersey Chronic Fatigue Syndrome Association produced the Consensus Manual For the Care of Chronic Fatigue Syndrome and lobbied for it to be made available to physicians in the state. The Manual has been translated into Japanese and Spanish and is available in other states. The NJCFSA also provides yearly conferences, 2 medical scholarships, supports a variety of New Jersey Support groups and has an extensive Youth Corner.
CFIDS and Fibromyalgia Self-Help Program- Created by a recovered CFS patient the CFIDS AND FM Self Help site is unique in the ME/CFS community with its comprehensive set of affordable online self management courses. CFIDS SELF-HELP also has a book, full library of articles, a CD course, and forms for pacing and other activities.
Rocky Mountain CFS /ME and FM Association - (Rocky Mountain CFS Associatioin Inc in Chase). Incorporated in 1991, the RMCFA provides regular speakers, a monthly email newsletter and an Action Center. It's Executive Director, Mike Munoz, was a co-founder of the Coaltion4ME/CFS - a national group of ME/CFS non-profits dedicated to improving conditions for people with ME/CFS. The Coalition4ME/CFS is currently working to reclassify CFS as neurological condition under the ICD 9 and 10-CM.
Check out an interview with Executive Director, Mike Munoz http://aboutmecfs.org.violet.arvixe.com/Adv/RMCFSA.aspx
Massachusetts CFIDS ME/FM Association - Celebrating its 25th anniversary last year, the Mass CFIDS Association published one of the first Physicians Primer for CFS, and the Update - a 50 page publication for healthcare providers and patients for almost 20 years, as well as what is easily the best and most comprehensive Disability Handbook on CFS in the US. They also host educational Forums, provide Disability and Physician referrals and provide an information hotline. They joined the Coalition4ME/CFS in 2011.
Warning - be careful about finding Mass CFIDS Association. If you type in Mass CFIDS - you won’t get it; you need to type in Mass C F I D S
CHRONIC FATIGUE SYNDROME FIBROMYALGIA ORG OF GEORGIA INC- provides regular meetings and resource links for the ME/CFS Community. They appear to be the only ME/CFS group in Georgia and perhaps much of the Southeast. The Chronic Fatigue Syndrome Fibromyalgia Org of Georgia joined the Coalition4MECFS in 2011.
Enterovirus Foundation - Founded by a mother, Lisa Faust, who with her daughter came down with a mysterious illness, after a bug swept through their community, the Enterovirus Foundation funds research into the same viruses that Dr. Chia found in many ME/CFS patients gastrointestinal tracts. Dr. Chia sits on the Enterovirus Foundations Board.
Connecticut CFIDS and FM Association - Soon to celebrate its 20th anniversary, the Connecticut CFIDS and FM Association provides a quarterly newsletter, operates an Information Hotline, helps fund medical research, and has advocated on the state level for the ME/CFS Community.
The above, with comments, originally appeared here.
blog comments powered by Disqus