PLATINUM2023

OPEN MEDICINE FOUNDATION

Leading Research. Delivering Hope.

aka OMF   |   Agoura Hills, CA   |  www.OMF.ngo

Mission

Mission To facilitate global collaboration and fund world-class research, medical education, and treatment trials, that make a positive impact on the lives of people with multi-system chronic complex disease Vision Significantly improve patient outcomes while advancing a cure for multi-system chronic complex diseases Goals Our primary goals are to: 1) frame clear disease mechanisms and models; 2) to find effective treatments and diagnostic markers; 3) increase accurate diagnoses; and 4) ensure access to quality care.

Ruling year info

2013

CEO/President

Linda Tannenbaum

Main address

29302 Laro Drive

Agoura Hills, CA 91301 USA

Show more contact info

EIN

26-4712664

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Specifically Named Diseases (G80)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Find a diagnostic tool, a cure and prevention of ME/CFS and similar chronic complex diseases, including Fibromyalgia, Chronic Lyme, Gulf War Illness, Long COVID and others. Educate physicians and school administrations regarding these diseases.

Our programs

SOURCE: Self-reported by organization

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

End ME/CFS Project

A collaborative research model:
The End ME/CFS Project was founded on the idea that a comprehensive, interdisciplinary effort is needed to produce breakthroughs in our understanding of ME/CFS and neuro-immune diseases. Our goal is to connect the best experts, from both inside and outside the field, through openness and information sharing.

Population(s) Served
Adults

The current COVID-19 pandemic offers an unprecedented opportunity to understand how a viral infection may convert to ME/CFS in some patients.

The six ME/CFS Collaborative Centers have begun a unique, extensive, in-depth longitudinal molecular study following COVID-19 patients. Their shared goal is to determine the pathways involved in maintaining long-term symptoms in some patients, possibly converting to ME/CFS. They seek to learn about these pathways so as to develop biomarkers, novel drug targets, new treatment, and prevention strategies.

Population(s) Served
Adults

Where we work

Videos

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of research studies conducted

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

End ME/CFS Project

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

Fast-tracking revolutionary research for ME/CFS and related chronic complex diseases (including Fibromyalgia, chronic Lyme, Autism). Facilitates and supports collaborative medical research to find effective treatments and diagnostic markers for difficult to treat illnesses.
Keeps the community informed by disseminating information on current research projects and results.
Brings together thought leaders from around the world to brainstorm and participate in targeted initiatives.
Encourages and engages the patient community to take an active role in their health care.

Open Medicine Foundation (OMF) raises funds from personal donations, foundations and crowdfunding.

Open Medicine Foundation (OMF) has raised over $30 million since 2012 for:
19 member world leader scientific advisory board: 2 Nobel Laureates, 6 members of the National Academy of Sciences
Other top researchers in working groups

Open Medicine Foundation (OMF) has raised over $30 million since 2012 for:
Established 5 ME/CFS Collaborative Research Centers:
Stanford
Harvard
Uppsala
University of Montreal
University of Melbourne

We are using the results of our studies and many others to lead us to to a cure, treatments, diagnostic tools and the ultimate goal of prevention.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.

  • Who are the people you serve with your mission?

    Patients with chronic complex multi-system diseases, advocates, families, researchers, clinicians

  • How is your organization collecting feedback from the people you serve?

    Community meetings/Town halls, Regular contact and social media ,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We have been assessing and improving the methods, frequency, and content of communications.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    Asking for feedback makes us a stronger organization and builds bonds and trust with our community

  • Which of the following feedback practices does your organization routinely carry out?

    We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

OPEN MEDICINE FOUNDATION
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Operations

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

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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OPEN MEDICINE FOUNDATION

Board of directors
as of 01/25/2023
SOURCE: Self-reported by organization
Board chair

Linda Tannenbaum

OMF

Term: 2012 -

Patti Linsley

Crescent Capital Group

Richard P.C. Rodgers, Emeritis

University of California, San Francisco

Linda Tannenbaum

Open Medicine Foundation

Kimberly Hicks

Open Medicine Foundation

Deborah Rose

Private Practice

Hany Zayed

PhD

Shai Held

Rabbi

Vicki Schultz

Schultz Financial Group

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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 and 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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 5/12/2022
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 05/12/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.