Understanding Axial Spondyloarthritis - Episode 17

The IFAA: Raising Awareness of NrAxSpa & Related Diseases

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Tiffany Westrich-Robertson: The International Foundation for Autoimmune & Autoinflammatory Arthritis [IFAA] was founded by myself and a couple of other people like me who are diagnosed with diseases that are either autoimmune or autoinflammatory, with arthritis being a major clinical component. We’re also professionals in business, education, and/or research. What happened was it started as an awareness movement. And when I got diagnosed in 2009, I literally said to myself in my living room: “I’m declaring an awareness movement.” What that meant I didn’t know, but it was also the time that social media became popular—Facebook, 2009.

So I started reaching out to bloggers and talking about the arthritis component with these autoimmune diseases, AKA also known as autoimmune arthritis. And what happened was I started meeting people from all over the world because I could now, with social media. And the strangest thing happened. Talking to them and hearing their stories, the fatigue, the low-grade fevers, the feeling of the flu-like symptoms, and then the arthritis component.

Well guess what? They didn’t all have rheumatoid arthritis. They didn’t all have ankylosing spondyloarthritis. We all had different diseases, yet we all had the same story, the same onset symptoms, these core kind of things that we could detect. And that’s when a light bulb went off. And myself and the other cofounders said, you know, maybe there’s a need to have a foundation that focuses on this core group. There’s nonprofits that focus on just arthritis. And there’s 100 different types. And then there’s autoimmune foundations that focus on over 100 autoimmune diseases. And then autoinflammatory where there’s a few dozen. But what if we focused just on the couple dozen that are either autoinflammatory or autoimmune that have arthritis as a major clinical component early in onset. And then we talked to a rheumatologist and started figuring out, well there’s even a smaller group of less than a dozen that typically present at onset, and that’s when we said, this is it, we have to start this nonprofit. Because the philosophy was, if we focus on these and the arthritis component, with the autoimmune or autoinflammatory features, it could progress detection, referrals, diagnosis, act as a treatment, then less disability, higher percentages of remission. That was really kind of the founding, how we did it.

What was interesting is we did it through conversation. And we realized the voices of those affected by these diseases were so powerful because they helped us connect the dots and realize the need. So the nonprofit, the mission, became, we wanted to help those affected by these diseases, utilize their voices to impact education, advocacy, and research. And we have stood by that, meaning, everything we do is based on conversation. We’re a very unique nonprofit in that we listen to the community, and that helps us identify the problem. And then we go back to them and they help us to brainstorm and implement the solution, all though conversation.

And one thing that we do is we focus on innovation. So we will never duplicate efforts. If there is a nonprofit doing something already, we will forward our community to them, or we’ll join forces. And if we see a gap that needs to be identified that is not addressed by anyone else, then we will reach out to our global network, which is any other nonprofit or patient advocate, to enlist the best team. And we will then create a solution that’s innovative and has immediate impact.

We were founded in 2011 on the back end of being an awareness movement that started in 2009. We actually got the notification, we were a nonprofit on my 40th birthday, so that was kind of cool. So that was in 2011. And at the time nobody really knew who we were, and we had this unique foundational model where we were utilizing the patient voice and we weren’t going to really duplicate efforts, so we were looking at innovative solutions.

That’s where I really come in to the nonprofit. My background in business development in project management is about problem solving. So I really brought the whole problem-solving component to the nonprofit, and I lead all of the brainstorms and all of the efforts to connect the dots and identify the gaps in existing issues in the community. And then as a former educator, I help teach other people to join in the brainstorm and help with the solution so it’s not just all me, I just can lead that. So I’m kind of the person who connects the dots, and helps with innovative solutions.