Volunteers and Public Input. Patients are at the core of all brainstorming, program development, and project implementation. In addition to continuous engagement and assessment of the patient population, we have two levels of volunteers who are key participants and partners.
Click on Co-Founder photos for links to current CVs
IFAA became an official nonprofit in 2011, but it originated as an awareness movement stemming from a charity bracelet designed with the same beading pattern. This pattern symbolized all people (3 silver, 3 black) working together to create strength (large red) and uniting as a community for change (single, darker silver). We adopted this for our foundation logo and changed it to a molecular structure, honoring how it all began.
Headquarters. IFAA's CEO resides in St. Louis, MO, where we participate in a co-working space - Industrious. This enables us to use conference rooms & event spaces as needed.
We utilize a "Global Network" approach on every project by enlisting the help of fellow patient advocates, nonprofits, advisors, and subcontracted experts. This enables us to put together the best team for each initiative we take on.
Coalitions. IFAA believes in collaboration. We currently participate in over a dozen coalitions, working with other organizations worldwide to ensure we can take action on issues that are important those affected by these diseases. Learn more about our coalition work.
Like all nonprofits, we are governed by aBoard of Directors. We keep this volunteer Board small (under 8) in order to streamline our productivity. We select members for the Board that bring a specific expert skill to the organization (project management, education, marketing, etc).
Virtual Officing. When IFAA's founders developed the working structure, they took into account that the patients working for & volunteering services for IFAA would require extreme flexibility to accommodate disease activity & flares - including the opportunity to 'work' when they feel best. Therefore, IFAA is open 24 hours a day, 7 days a week so those involved can participate when they feel best, and in turn, promotes heightened productivity. We have helpers located all over the world who collaborate using online technologies.
We work simply and effectively. Our 'core team' includes the CEO, Co-Founders, Employees (under 5 at all times), and two levels of volunteers:
Representatives are volunteers who have been with IFAA for a minimum of 3 months & who dedicate significant time to helping create & run our programs.
Partners are volunteers who support the nonprofit by helping on projects, sharing programs, and fundraising.
Most of our initiatives include the voice of the patient population, in addition to the opinions of our core team. So from the CEO to volunteers to the public, we involve the patient at every level!
Fun Fact: About the Logo
What does IFAA do? Unique to IFAA is our foundation model. We use our role as patients to communicate with others in our community to identify the most pressing community problems, then we use our professional background in business development, project management, education, and research to develop and implement solutions. In each project we implement a “Global Network” strategy, recruiting other community leaders, nonprofits, advisors, subcontractors, and our own patient volunteers to establish the best TEAM for implementation. From the way we have created our unique organizational model that puts the patient at the heart of all we do to implementing projects that are changing the landscape of healthcare, we are leading the way for 'next generation nonprofits'.
Like other nonprofits, we do overall work in awareness, education, and advocacy, but we are strongly project-based and have a major focus utilizing patients to streamline research and to bridge that research to influence public policy.
IFAA Representatives with Dr. Richard Seigel & Dr. John O'Shea, Directors at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the National Institutes of Health (NIH) team.
IFAA WORKS TO ELIMINATE THE ADVERSITY ASSOCIATED WITH THOSE AUTOIMMUNE AND AUTOINFLAMMATORY DISEASES WITH ARTHRITIS AS A MAJOR COMPONENT. WE DO THIS BY USING OUR ROLES AS PATIENTS TO IDENTIFY THE PROBLEMS, AND OUR BACKGROUNDS IN EDUCATION, BUSINESS, AND RESEARCH - IN CONJUNCTION WITH A GLOBAL NETWORK OF COLLABORATORS - TO DEVELOP AND IMPLEMENT SOLUTIONS.
The purpose of establishing IFAA was based on the realization, through patient-to-patient communications globally, that a small group of autoimmune diseases (and now some that are considered autoinflammatory diseases) that presented with similar symptoms, regardless of diagnosis. These included joint pain (arthritis), fatigue, fevers of various levels, brain fog, severe stiffness after rest.
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