IFAA (pronounced I-F-A-A) is a global nonprofit organization created by patients who are current and former educators and business professionals. After speaking with autoimmune and autoinflammatory disease patients from all over the world, we realized that early disease symptoms were so similar, regardless of diagnosis, and often included 'arthritis' as a major component. By grouping together these specific diseases we believe we can bring needed attention to their similarities and differences, thus promoting better awareness, disease education and management, and treatment options.
When IFAA's founders developed the office 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...even if that is in the middle of the night. Additionally, we have volunteers from all over the world, all in different time zones. Therefore, we mostly work through online & video collaboration.
chief executive officer
tami caskey brown
Tiffany Westrich-Robertson is a patient with overlap diseases of Rheumatoid Arthritis, Axial Spondylitis, and Sjögren's Syndrome. However, she is currently experiencing bouts of vasculitis - like rashes, canker sore outbreaks, and eye involvement symptomatic of Behcet's Disease, so her official diagnosis may change. IFAA's co-founders have also been re-diagnosed since IFAA obtained nonprofit status in 2011. Tami Caskey-Brown was originally was diagnosed with Rheumatoid Arthritis and Sjögren's Syndrome, but that has expanded to include Systemic Lupus Erythematosus. Kelly Conway was originally Sjögren's Syndrome, then Rheumatoid Arthritis, now has had Rheumatoid Arthritis removed and replaced with Polyarticular Spondyloarthropathy. While these changes and advancements in disease diagnoses may seem "unbelievable", they are, in fact, more common than not; it is a major reason why IFAA formed an official nonprofit to focus on these very similar, and often overlapping diseases.
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.
Patient Inclusion in Research, including Patient Initiated Research & Patient Research Partnerships. Since the late 1990's in Canada & early 2000's in Europe, bringing patients on to the research team has been evolving. In the United States around 2011, patient-centered research outcomes became a strong focus for establishing research endpoints. In 2015, IFAA pushed the boundaries yet again, as we put patients in leadership roles with researchers as advisors. As of today, IFAA is considered one of the leading groups internationally in patient involved research.
Differentiating Arthritis Types. Misunderstandings surrounding types of arthritis has led to delays in detection, referrals, diagnosis, and treatments which, in turn, contributes to the excessive costs to the health care system. This extends to:
Non-patient lack of education, including public as well as patient peers, friends, and family, can lead to conflicts in a patients' personal and professional life. This can result in social and emotional stress, which can aggravate disease activity.
Fun Fact: About the Logo
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 educational and business backgrounds to develop and implement solutions.
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. The space is national, so we also have access to offices in all participating cities.
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!
IFAA is not like any other nonprofit. We are patients who use our background experience in business development, project management, education, and research to identify and solve community problems. Also unique to IFAA, is we are highly project based (rather than raising funds for an overall mission), so we constantly are joining forces with other community leaders, nonprofits, advisors, and subcontractors to ensure we produce the best outcomes possible. 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'.
For every project we utilize a "Global Network" approach, which means we reach out to collaborators to bring another level of expertise to the initiative. They include:
Subcontractors are hired as needed, which keeps our core team small & ensures we get the 'best of the best' assistance for each unique project (or when we are running dual projects at the same time).
Advisors are utilized from both skill specific and from the medical community. Sometimes they volunteer their services, other times they are paid an honorarium for their contributions. Advisors are selected for each initiative, rather than enlisted one Advisory Board to oversee every internal need.
In addition to contracting professional assistance and advisors, we collaborate with other nonprofit organizations and/or Patient Advocates on every project we do. We simply believe that together we can make the biggest difference.
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).
Copyright 2017. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. Tax ID: 27-1214308