My Nonprofit Reviews

When I was first diagnosed, I was directed to this organization for information and support. The free webinars, podcasts, support groups and website have helped me tremendously. And somehow, even though this disease is life-long and can be debilitating, the message I have received through it all is one of empowerment. There is so much energy in in the Spondylitis Association of America that I get excited, not frustrated, by the postings on social media and through the emails I receive. I can't think of a better run organization. Wow!

I became aware of the Spondylitis Association of America after I was diagnosed with a form of spondyloarthritis two years ago, early in the pandemic. It was a scary time, with the pandemic raging and no vaccines yet available. I was isolated with a disease that had an unpronounceable name.
SAA was my lifeline. This organization has kept me informed, connected me to other “spondies,” and continues to give me a sense of hope. I don’t have to look far to find what I need: there are frequent social media posts reminding me of upcoming educational webinars, support group meetings, exercise videos, and storytelling events.
When I considered where to donate to this year, SAA quickly rose to the top of my list. The staff is caring, responsive, and energized. That energy flows into the SAA community and it shows. Everyone seems to be having a good time – which is amazing when you consider that chronic pain and fatigue are part of the disease.
My rheumatologist thinks that 2% of the US population has some form of spondylitis, a rate much higher than the prevalence of Rheumatoid Arthritis. It often takes years from onset of symptoms to a correct diagnosis. In my case, it took decades, despite my sister having the same disease. My rheumatologist diagnosed me in the first five minutes of my first visit with him, while every other specialist I had seen over the years couldn’t. After my diagnosis I had to spell out the name of my condition to my endocrinologist. That was unsettling and even scary for me. How is it possible for a medical doctor to be unaware of a condition that affects at least 1% and perhaps 2% of the population?
The continued work SAA does in education (educating both patients and clinicians who are unaware of the disease), advocacy and research is vital to helping people get access to appropriate care quickly. SAA does it so well, and the need is great, so I give them Five Stars.