Disease, Disorders, Medical Disciplines

Solve ME/CFS Initiative, Inc.

  • Los Angeles, CA
  • www.solvecfs.org

Mission Statement

The Solve ME/CFS Initiative (SMCI), is the leading charitable organization dedicated to making ME/CFS widely understood, diagnosable and treatable. We believe our focus on research is the most effective way for us to serve the patient community and to achieve our mission.

Seventeen million people worldwide suffer from ME/CFS and there is no FDA approved treatment for the disease. Currently U.S. Federal research funding for ME/CFS falls dismally below acceptable levels, however recent announcements from the NIH have given us hope for increased funding in coming years. SMCI has advocated with our government leaders to help bring about the recent sea change.

To ensure the medical research is positioned to optimize significant federal funding when it is made available, we will fund credible seed grants, conduct our own studies in promising areas and strengthen our Solve ME/CFS BioBank.

(Solve ME/CFS Initiative - Formerly known as the CFIDS Association of America- was founded in 1987 and has established itself as the leading charitable organization dedicated to ME/CFS )

Main Programs

  1. ME/CFS Research
  2. ME/CFS Education

service areas

International

Self-reported by organization

ruling year

1991

chief executive for fy 2013

Ms. Carol Head

Self-reported by organization

Keywords

ME/CFS, CFS, chronic fatigue syndrome, SolveCFS, CFIDS, health, CFIDS Association of America, CFIDS Association

Self-reported by organization

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EIN

56-1683450

Physical Address

5455 Wilshire Boulevard Suite 806

Los Angeles, CA 90036

Also Known As

Solve ME/CFS Initiative

Contact

Cause Area (NTEE Code)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Specifically Named Diseases Research (H80)

Alliance/Advocacy Organizations (H01)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Impact statement

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 Vice President of Research and Scientific Studies, 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 repository of blood and tissue samples from well-characterized ME/CFS patients.

Programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

Self-reported by organization

Program 1

ME/CFS Research

The Solve ME/CFS Research Plan is an ambitious yet pragmatic program aimed at advancing research to discover the underlying causes of ME/CFS, develop safe and effective treatments, and search for a cure. Our program has three main components:

The SolveCFS BioBank and Patient Registry, the largest repository of samples from ME/CFS patients and a roster of consented patients. Developed and maintained by our organization and available to all qualified investigators, the BioBank is a vital resource for the ME/CFS research community.

Funding innovative, promising research through seed grant funding. Since 2008, we have been making effective seed grants to ME/CFS investigators leading to new discoveries and a seven-fold increase in follow-on funding from other sources. We will build on this success by continuing to provide seed funding and by supporting pilot studies and fellowships.

Grant-making and original research in collaboration with carefully selected external partner scientists focuses on three of the most promising areas with direct relevance to ME/CFS:
• bioenergetics (how our cells make and use energy);
• neuroendocrine issues (implicated in disruption of autonomic nervous system function experienced by almost all ME/CFS patients to varying degrees); and
• immune and inflammatory processes (which appear to play a significant role in many patients and which are susceptible to intervention)

Category

Medical Research

Budget

$933,590

Population Served

Disabled, General or Disability Unspecified

None

Program 2

ME/CFS Education

Solve ME/CFS Initiative (SMCI)strives to give a voice to a community that has been muted for far too long. We provide information via our newsletter, the Chronicle, monthly e-newsletter, blog posts, our website and webinars. Create forums for interaction and community building via social media and our patient story share site, Humans of ME/CFS. Additionally are the voice of the patient as we advocate for increased attention and spending with the NIH, CDC and members of Congress and their staff.

Category

Medical Research

Budget

$334,511

Population Served

Disabled, General or Disability Unspecified

None

Charting Impact

Five powerful questions that require reflection about what really matters - results.

Self-reported by organization

  1. What is the organization aiming to accomplish?
    Our goals include:
    1) finding an reliable biomarker that will lead to accurate diagnosis of ME/CFS
    2)conducting research that will lead to the development of an FDA approved treatment for ME/CFS
    3)ultimately finding a cure for ME/CFS
  2. What are the organization's key strategies for making this happen?
    We have a multi-pronged strategy to Solve ME/CFS that includes:
    1) support rigorous and thorough research
    2) educate the medical community about research advances
    3) partnering with thought leaders and policy makers to facilitate advanced research
    4) amplifying the voice of patients in participatory research
    5)reduce barriers to research by making materials and know-how readily accessible
  3. What are the organization's capabilities for doing this?
    The Solve ME/CFS Initiative is the non-profit leader of ME/CFS as recognized by the patient community, government agencies and by researchers . Our Solve ME/CFS BioBank and Patient Registry is a significant resource to researchers that is critical to moving us towards our goals. Our president, Carol Head brings a wealth of experience and a laser-like focus on achieving our goals. Dr. Zaher Nahle has a successful track record and multi-disciplinary background ideally suited to solving ME/CFS. We continue to expand and develop our very strong relationships with researchers and scientists worldwide.
  4. How will they know if they are making progress?
    There are many measures for progress including:
    1) Acknowledgement by our government that ME/CFS is a real and under-served disease
    2) Increasing the number of qualified ME/CFS scientists and researchers
    3) Changing federal policy that is more favorable to ME/CFS
    4) Increased federal funding for ME/CFS
  5. What have and haven't they accomplished so far?
    This year's IOM report and NIH's Pathways to Prevention report signal a change in attitude and mindset by our federal government towards ME/CFS. Both highly respected institutions reported that ME/CFS has been misunderstood and under-funded for far too long. Solve ME/CFS Initiative has been integral in influencing this change. Recently, the NIH issued a press release announcing a new home within the NIH for ME/CFS and the initiation of a major clinical study. Solve ME/CFS Initiative is working closely with the NIH to help shape the overall research strategy for ME/CFS. We are currently supporting 4 different research studies, some with preliminary promising findings.

    We intend to offer more seed grants to not only attract new scientists to the field, but also to create proof of concept findings which will increase the likelihood of approval of larger NIH grants when made available.

    We have not yet found a biomarker nor have we discovered a treatment or cure for ME/CFS.

service areas

International

Self-reported by organization

Blog

The organization's Blog

Social Media

@CFIDSAssn

@plzsolvecfs

@solvecfs

Funding Needs

The field of CFS research is at a pivotal moment - a defining moment - for CFS, with critical opportunities to propel the field forward in unprecedented ways and to accelerate the rate of progress. The first phase of our fund-raising effort attracted $1 million in support by August 2008. Now we've launched the second phase with a goal of raising $5 million by Dec. 31, 2010.

Accreditations

Better Business Bureau Wise Giving Alliance

Videos

photos




External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

CFIDS ASSOCIATION OF AMERICA INC
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

The people, governance practices, and partners that make the organization tick.

Solve ME/CFS Initiative, Inc.

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

CHIEF EXECUTIVE FOR FISCAL YEAR

Ms. Carol Head

BIO

Carol Head joined the Solve ME/CFS Initiative as President 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.

STATEMENT FROM THE CEO

"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"

Governance

BOARD CHAIR

Dr. Victoria Boies

BOARD LEADERSHIP PRACTICES

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices. Self-reported by organization

Yes

BOARD ORIENTATION & EDUCATION

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

Has the board conducted a formal, written assessment of the chief executive within the past year?

Yes

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?