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Solve ME/CFS Initiative, Inc. Organization Name provided in the GuideStar Exchange* as of 05/30/2014: Solve ME/CFS Initiative, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: SOLVE ME CFS INITIATIVE INC

* The 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.

AKA  Solve ME/CFS Initiative
Charlotte, NC
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Solve ME/CFS Initiative, Inc. Organization Name provided in the GuideStar Exchange* as of 05/30/2014: Solve ME/CFS Initiative, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: SOLVE ME CFS INITIATIVE INC

* The 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.
Also Known As: Solve ME/CFS Initiative
Physical Address: Charlotte, NC 28222 0398
EIN: 56-1683450
Web URL: www.SolveCFS.org 
Blog URL: solvecfs.org/category/blog/ 
Video URL(s): Meet Carol Head, President & CEO
What would you do tomorrow if you were completely well?
NTEE Category: G Disease, Disorders, Medical Disciplines
G99 Diseases, Disorders, Medical Disciplines N.E.C.
H Medical Research
H80 Specifically Named Diseases Research
H Medical Research
H01 Alliance/Advocacy Organizations
Year Founded: 1987 
Ruling Year: 1991 
How This Organization Is Funded: Public Support - $2,261,366
Research Subcontract - $18,091
Other - $2,432


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Mission Statement

The Solve ME/CFS Initiative (SMCI), (formerly known as the CFIDS Association of America) was founded in 1987 and has established itself as the leading charitable organization dedicated to myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) – also known as chronic fatigue and immune dysfunction syndrome (CFIDS) - investing more than $32 million to end the life-altering disability, stigma and isolation of ME/CFS. Our mission is to make ME/CFS widely understood, diagnosable, and treatable. We do this 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. SMCI is working every day to change the future for people with ME/CFS. Putting research first, we will turn science into treatment for ME/CFS.

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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Annual Revenue & Expenses (GuideStar Exchange,
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May 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

Total Revenue $2,281,889
Total Expenses $1,470,852

Revenue & Expenses (GuideStar Exchange,
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May 2014)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar Exchange,
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May 2014)

Ms. Carol Head

Term:

Since Oct 2013

Profile:

Carol Head joined the Solve ME/CFS Initiative (formerly known as the CFIDS Association of America) 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, 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 Solve ME/CFS Initiative, (formerly known as the CFIDS Association of America) 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 Solve ME/CFS Initiative (SMCI). 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 SMCI. 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 Solve ME/CFS Initiative

Board Chair (GuideStar Exchange,
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May 2014)

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Board Co-Chair (GuideStar Exchange,
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May 2014)

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Board of Directors (GuideStar Exchange,
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May 2014)

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Board Leadership Practices (GuideStar Exchange,
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May 2014)
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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Yes
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Yes
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Yes
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Yes
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
No

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

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People information was last updated by the nonprofit in May 2014

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Programs

Program: ME/CFS Research (GuideStar Exchange,
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May 2014)

Budget:
$916,340
Category:
Chronic Fatigue Syndrome
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

Building on investments in ME/CFS research made by the Solve ME/CFS Initiative (SMCI), the National Institutes of Health (NIH) and other government agencies around the world, the Research Institute Without Walls (RIWW) was launched in February 2012. With the RIWW, SMCI breaks out of the conventional non-profit role of simply sponsoring medical research and becomes a full partner with leading research institutions, putting patients at the core and center of tightly integrated projects that will advance objective diagnosis and effective treatment.

Program Long-Term Success:

In a gap analysis completed in 2008 by SMCI's full-time scientific director, Dr. Suzanne Vernon, access to well-characterized ME/CFS patients was identified as a key barrier to engaging researchers in the study of ME/CFS. In 2010 the SolveCFS BioBank was established as the first patient-centered registry and repository of clinical data and biological specimens for ME/CFS. To date, we have enrolled 800+ participants and completed the first proof-of-concept study with a major pharmaceutical partner. Results of this study will be published in 2014. The SolveCFS BioBank is at the hub of the Research Institute Without Walls. Samples collected for the proof-of-concept study met the initial needs of RIWW projects and now we’re able to offer partners a customized sample collection to fit particular study criteria and sample processing and storage protocols. The SolveCFS BioBank enables participants to take an active role in research and has demonstrated value as a cost-effective resource for researchers who do not have access to clinical populations. We envision expanding capability to collect natural history information at regular intervals and to handle collection of other types of tissues. The BioBank can also be used as a clinical trials registry to facilitate treatment studies.

Program Short-Term Success:

One important measure of impact is the amount of follow-on funding applied for and secured by research teams to foster larger studies. SMCI's 2009-2010 grantees attracted a combined total of $7 million in awards from the NIH, Department of Defense, pharmaceutical companies and foundations.

Program Success Monitored by:

Research program is monitored by the Board of Directors.

Program Success Examples:

Program: ME/CFS Education (GuideStar Exchange,
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May 2014)

Budget:
$24,900
Category:
Chronic Fatigue Syndrome
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

Solve ME/CFS Initiative (SMCI) knows that we can't achieve our goals without an informed and connected patient population. Patients are a key ingredient to making ME/CFS understood, diagnosable and treatable. To that end, we are working to empower patients with more information through our Catalyst Cafés, e-newsletters, the SolveCFS Chronicle publication and online.

Program Long-Term Success:

Program Short-Term Success:

More than a quarter of a million people visited the SMCI website last year, most searching for answers, looking for hope. SMCI holds the most extensive library of patient information and resources, reports on the latest updates and research opportunities and helps patients feel less alone. In an effort to make this information easier to find, readily share-able and more deeply engaging we launched a new web presence which replaces the SolveCFS BioBank micro-site, CFIDS.org and the Research1st blog with one synthesized online presence. The synergy achieved through www.SolveCFS.org will reach more patients, engage more in the research process, and better involve all ME/CFS stakeholders in the important work of the SMCI. Early numbers tell us that people are staying on the site more than twice as long as they did on the old website - a key indicator that visitors are finding what they need in a more welcoming format. We continue to hold Catalyst Café events across the US. Meeting in homes and offices, restaurants and community rooms, SMCI staff members are bringing details about our research program and its impact to people who are most affected by ME/CFS.

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

Solve ME/CFS Initiative (formerly known as the CFIDS Association of America) is actively building the capacity of the scientific community to transform ME/CFS into a condition that is understood, diagnosable, and treatable. 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 ME/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 ME/CFS patients.
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