IFAA is an International Foundation advocating for those affected with Autoimmune and Autoinflammatory diseases with Arthritis as a major component. As a nonprofit, our work is based on our own experiences as patients, in addition to what we learn from the patient public, which is used to identify the most important community issues that need to be addressed. Then we use our backgrounds as educators and business professionals, in addition to extensive relationship building and networking (called “the Global Network” approach), to design and implement solutions.
Systemically Connected – the Official IFAA Blog
IFAA earned nonprofit status in May of 2011, and since then we have become an award-winning organization, respected leaders in research, education and awareness initiatives, and advocacy efforts. We are constantly building our knowledge by attending a variety of conferences, meetings, webinars, and several of our team members participate in continued education activities to enhance our skills in research, virtual online education, business practices, and nonprofit management. We are key participants in both online and in person speaker panels, serve on patient reviewer research committees, and collaborate with other nonprofits, coalitions, and patient advocates daily. We have toured the labs of pharmaceutical companies and the National Institute of Health and built relationships with dozens of top research affiliates in several countries around the world – including those in academia, government, rheumatologist and nurse led organizations, and drug development. With the help of mentors and advisors, along with nonprofit collaborators, we have developed new, forward-thinking models of patient engagement in research, putting the patient not only on the research development team, but in the actual leadership roles (Patient-Influenced Research). Approximately a dozen of our Representatives (including all co-founders) have participated in organized fly-in’s to Washington D.C., fighting for patient access to treatments, step therapy issues, and the need for more research dollars for the diseases as a whole and specific areas (such as dental research for autoimmune diseases).
Over the years these experiences have made us experts in a variety of topics, including:
Research: Patient-centered research initiatives, patients as part of the research development (pre-discovery through post-clinical phases), pharmaceutical and non-pharmaceutical patient-preferred research outcomes, grant reviewing, current efforts/future directions, personalized medicine
Education: Differences in arthritis types, autoimmunity and autoinflammatory diseases including the difference between, symptoms – both published and patient reported, biosimilars, drug development, non-pharmaceutical treatments, medical marijuana, learned resources from over 40 nonprofits that we have access to sharing (due to hosting World Autoimmune/Autoinflammatory Arthritis Day annually each May)
Advocacy: Step therapy, non-medical switching, efforts to create value measurements that help guide insurance company treatment decisions (all of which are relevant to IFAA’s groundbreaking investigation, with the help of two bioethicists and public policy expert, Kathleen Arntsen of Lupus and Allied Diseases Association, into the Ethics of Step Therapy), biosimilars
We are constantly told, “IFAA has a wealth of information to share with patients,” so now it’s time we do just that. Introducing Systemically Connected, the official blog of IFAA, a resource based on our experiences as patients who are changing the world of rheumatology one step at a time.
What Makes this Blog Unique?
At IFAA, we try to take everything we do to the next level. This is no different! Systemically Connected will not only turn all of our past, current, and future experiences into articles that will help you gain more information about topics that are important to you, but all discussions (including your comments) that follow each post will be collected for research purposes and future project development. Your voice really does matter at IFAA!
More about IFAA and our experience
Our CEO and co-founder, 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, co-founder, originally was diagnosed with Rheumatoid Arthritis and Sjögren’s Syndrome, but that has expanded to include Systemic Lupus Erythematosus. Kelly Conway, co-founder, 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. This 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.
Tiffany’s background is in business development, project management, relationship marketing, and public speaking, and she also worked as a college teacher for almost a decade. She has spent the last 7 years taking courses and part time jobs in research, in order to apply it back to IFAA, and has served as a grant reviewer for both PCORI & the American Institute of Biologic Sciences. She currently holds the sole patient chair reviewing at the National Institute for Arthritis and Musculoskeletal and Skins Diseases (NIAMS).
Tami worked in the law enforcement and legal professions as an executive administrator and paralegal for over 25 years prior to her early retirement due to autoimmune disease related disability. She was contracted as a permanent PCORI grant reviewer through 2014 and now serves as a trainer for new reviewers.
Kelly holds master’s degrees in both Special Education and Speech-Language Pathology. She works full time as a speech language pathologist both in a public school setting and as an adjunct faculty member at a university. Kelly specializes in autism and augmentative/alternative communication, and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2010.
IFAA also employees assistants and enlists subcontractors and advisors as necessary, and additionally collaborates with other organizations on every project – ensuring the best team is assembled to produce the best outcomes. However, the patient is at the core of all ideas, programs, and projects – which are determined by listening to our volunteers and the public patient and supporter population.
“Together we can move mountains. Bulldozers are so overrated.” –Tiffany Westrich-Robertson, CEO IFAA