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CFIDS Association of America.

 

Charlotte, NC

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CFIDS Association of America.

Physical Address:
Charlotte, NC 28222 0398
EIN:
56-1683450
Web URL:
www.SolveCFS.org
Blog URL:
solvecfs.org/categor...
Leadership:
Ms. Carol Head
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Legitimacy Information

  • This organization is registered with the IRS.
  • This organization is required to file an IRS Form 990 or 990-EZ.

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Fiscal Year Starting: Jan 1, 2012
Fiscal Year Ending: Dec 31, 2012
Revenue
Total Revenue $1,104,169
Expenses
Total Expenses $1,248,136

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Financial data from Forms 990 for Year 2012, 2011, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
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GuideStar Exchange Member

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Basic Organization Information

CFIDS Association of America.

Physical Address:
Charlotte, NC 28222 0398
EIN:
56-1683450
Web URL:
www.SolveCFS.org 
Blog URL:
solvecfs.org/categor... 
NTEE Category:
G Disease, Disorders, Medical Disciplines 
G99 Diseases, Disorders, Medical Disciplines N.E.C. 
G Disease, Disorders, Medical Disciplines 
G01 Alliance/Advocacy Organizations 
G Disease, Disorders, Medical Disciplines 
G80 Specifically Named Diseases 
Year Founded:
1987 
Ruling Year:
1991 
How This Organization Is Funded:
Public Support - $1,088,346
Research Subcontract - $12,357
Other - $3,466

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Mission Statement

Our Mission is to make ME/CFS widely understood, diagnosable, and treatable by stimulating participatory, patient centered research aimed at the early detection, objective diagnosis and effective treatment of ME/CFS through expanded public, private and commercial investment.

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

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Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.

Financial Data

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Revenue and Expenses

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Revenue and Expense data from Forms 990 for 2012, 2011, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart


Balance Sheet

Balance Sheet data from Forms 990 for Year 2012, 2011, 2010, 2009, 2008 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.


Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar ExchangeThe GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more. April, 2014)

Ms. Carol Head

Term:

Since Oct 2013

Profile:

Carol Head joined the CFIDS Association as President and CEO in October of 2013. Carol is an executive with more than 25 years success in both the for-profit and non-profit sectors. She’s an experienced business owner, corporate executive, communicator and problem-solver. In the private sector, she most recently served as CEO of two companies. Previously, she served as vice president of marketing for two internet-based companies. Carol also spent eight years as an executive at the Los Angeles Times in a variety of marketing and strategy roles. She served as associate vice president of the 1984 Los Angeles Olympic Organizing Committee. Carol has been active in community affairs, serving on three national non-profit boards, including service as a board chair. Carol is a founder of Project Redwood, a venture philanthropy fund which supports creative approaches to alleviating extreme global poverty. She received a Bachelor of Arts in English from Wellesley College, and earned an MBA from Stanford University.

Leadership Statement:

Friends, As the year draws to a close, many of us reflect on what we are most thankful for as we look ahead to the new year. I’m deeply gratified by the opportunity to play a leadership role in solving ME/CFS. While it’s unacceptable that we are still so far from solving ME/CFS and that we don’t yet know why we get sick or why some of us get better, I am hopeful about the path ahead. The work of the CFIDS Association is to make real the day when ME/CFS is solved. As a patient, I’m dedicated to assertively leading that effort. When I became ill with ME/CFS in the 1980’s, I discovered the CFIDS Association. I recall the deep sense of relief in realizing that I was not alone. Although I have never known why, I experienced years of gradual improvement, never dreaming that I’d have the opportunity to use my leadership experience and entrepreneurial drive to join the fight to solve ME/CFS. I look forward to faster progress along the path toward a cure and am confident in the direction of the Association. I’m also keenly aware that we can’t do this alone. It will take all of us - patients, researchers, funders, government agencies, other ME/CFS organizations – working together to bring safe and effective, approved therapies to market to eradicate this dreadful and debilitating illness. At www.SolveCFS.org , you will read more about how we’re working to drive faster and more effective progress. We hope you find strength in knowing we are here, working with you, toward solving ME/CFS. We hope you’ll support us. Together we can Solve ME/CFS! Carol Head President & CEO CFIDS Association of America



Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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Program: Program

Budget:
--
Category:
Population Served:
General Public/Unspecified

Program Description:

The Association leads programs in CFS education, public policy and research. We work to build awareness and recognition of CFS as a serious, widespread and life-altering illness. We are committed to meeting the varied information needs of patients and the other audiences we serve caregivers, medical professionals, members of the media and general public, legislators and public health officials through our website, print publications, free materials and outreach efforts. Our medical education program is helping to improve health care providers abilities to detect, diagnose and manage CFS and bring a higher level of care to their CFS patients. Since 1992, the CFIDS Association has maintained a consistent presence in Washington, DC, representing the healthcare concerns and medical research interests of people with CFS to policy makers and agency officials. The goals of our public policy program are to shift the burden of funding promising CFS research from patients to the federal government, ensure accountability for federal CFS programs and increase grassroots involvement in the process of developing federal health policy relating to CFS. The Association has invested over $4.7 million in CFS research efforts, second only to the federal government. The Association pursues an entrepreneurial research strategy, funding innovative, scientifically sound pilot studies that often lack the preliminary data required by more traditional grant sources. We also work to improve the quantity and quality of CFS research, attract talented investigators to the field of CFS science and dedicated clinicians to the care of CFS patients. Through these and all our efforts, the Association strives to speed progress toward better health to all those with CFS.

Program Long-Term Success:

The Association launched "The Campaign to Accelerate CFS Research" with an unprecedented goal of raising $1 million by the end of 2008. Thanks to the support of well over 1,000 individual donors, the CFIDS Association of America reached its milestone $1 million research goal ahead of schedule, enabling us to fuel the biggest nongovernmental CFS research initiative ever undertaken in the United States. Infusing $1 million into research?while a dramatic spike for a single year?is not an endpoint by any means, but instead is a springboard to boost the Association?s comprehensive approach to the quest for finding cures. With the first gifts raised in the current campaign, the Association created the position of Scientific Director and hired highly-respected microbiologist and CFS expert Suzanne Vernon, Ph.D., in November, 2007, to guide its scientific activities. At the top of the agenda is the intent to seed new laboratory and clinical studies. The Association?s aim is to advance the discovery of biomarkers and methods for early detection, objective diagnosis and effective treatment of CFS. Dr. Vernon has restructured the Association?s grant application process and made the competition for grants tighter and more robust. Parallel to the grant-making process, the Association is doing much more to bring about meaningful progress in other ways. Under Vernon?s expert guidance, the Association has taken the lead in fostering new collaborations among investigators and other potential funding sources, recruiting new investigators to the field of CFS, and promoting regular, vigorous communication within the scientific community to maximize results.

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: CFS Research

Budget:
$728,000
Category:
None
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

The Association's research program seeks to accelerate the discovery of biomarkers, better diagnostics and more effective treatments for chronic fatigue syndrome (CFS). In 2009, funding of six institutional researchers whose applications were evaluated by a peer review committee for their relevance and potential success began totaling $389,381.

Program Long-Term Success:

Program Short-Term Success:

Other highlights in 2009 included a) two in-person meetings of the Association's CFS Research Network, which consisted of the principal investigators and clinical collaborators of the six projects approved for funding, invited guests and selected staff members; b) four papers authored by the Association's Scientific Director and three from funded investigators were published in peer reviewed journals; c) four grant applications were prepared and submitted to federal agencies for funding; and d) the Association became a member of Genetic Alliance, the world's leading nonprofit health advocacy organization committed to transforming health through genetics.

Program Success Monitored by:

Research program is monitored by the Board of Directors.

Program Success Examples:

Program: CFS Education

Budget:
$450,000
Category:
Diseases, Disorders & Medical Disciplines
Population Served:
Disabled, General or Disability Unspecified

Program Description:

The Association educates CFS patients, health care professionals, friends and family members and the general public about the illness through its publications, web site, free information packets, sale of educational materials and exhibits and events at public venues throughout the United States.

Program Long-Term Success:

Program Short-Term Success:

Highlights for 2009 include a) television and radio public service announcements produced by the Association aired over 4,577 times with a total of 35.25 million viewer impressions and 36 free hours of commercial airtime valued at $271,100; b) estimated traffic figures provided by eight public venues indicate that as many as 775,625 consumers were exposed directly (via visitors and passersby) to the Association's traveling photo exhibit; c) approximately 20,000 individuals received copies of the Association's publications, the CFIDS Chronicle and SolveCFS, which serve to educate and inform those affected by the illness; d) the Association distributed a monthly e-newsletter to 12,000 members; e) initiated a series of three reader surveys to develop reader profiles, seek input on topics of interest and provide feedback on the e-newsletter; and f) launched a Facebook page attracting by year-end, 3,000 members from 20 different countries.

Program Success Monitored by:

The CFS education program is monitored by the Board of Directors.

Program Success Examples:



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Impact Summary from the Nonprofit

The CFIDS Association is actively building the capacity of the scientific community to transform CFS into a condition that is treatable, preventable and curable. Under the guidance of our full-time scientific director, Dr. Suzanne Vernon, the multifaceted research program is: Funding innovative laboratory and clinical studies; Encouraging the use of cutting-edge technology to analyze existing data in new ways; Strengthening collaborations with investigators around the world; Capitalizing on the minds of gifted scientists in other fields of medical research; Recruiting new talent to the CFS field; Facilitating proactive communication within the scientific community to share ideas, knowledge and data to advance the field; and Building a respository of blood and tissue samples from well-characterized CFS patients.

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