Her first rheumatologist diagnosed her with Undifferentiated Connective Tissue Disease (UCTD) – which meant her clinical presentation was not pointing to one, specific disease.  While "Undifferentiated Disease" can be treated with first line disease modifying agents, her doctor wanted to watch and wait to see if the disease progressed before treating it.  As a result, the pain had spread to two dozen locations on both sides of her body. She was sleeping sixteen hours a day and had been running a fever for more than four weeks without relief. After seeking out the help of a new rheumatologist, she was diagnosed with sero-negative Rheumatoid Arthritis (RA), which meant all of her blood work and x-rays were normal, but she had enough clinical features to meet the diagnostic criteria for RA - even though many of her symptoms were not typical of the disease. 

The new rheumatologist prescribed her first line disease modifying agents and within days her fever broke, she was back to a normal sleep schedule, and the pain had diminished significantly. However, due to the delay in treatment, an magnetic resonance image (MRI) of the left wrist showed inflammatory damage. 

This persons' journey to diagnosis is not unique. But it did inspire her to do something to raise awareness about these very misunderstood diseases. Little did she know it was about to snowball into something much bigger. 

Many stories help "connect the dots".     The Movement was featured on a popular blog, and additionally was launched at the same time social media popularized. As a result, in just a few months orders came in from all over the world - over 30 states in the US, Canada, Ireland, Scotland, Australia, New Zealand, UK, Turkey, Japan, and several other countries. Instead of simply designing and mailing each piece, Tiffany personally emailed each person who placed an order, thanking them, telling them her story, and asking them theirs. Most people responded with their stories, but much to her surprise while they were similar to hers, not everyone was diagnosed with RA. Some had Psoriatic Arthritis or Lupus or Ankylosing Spondylitis or Sjogren's Syndrome or Still's Disease or Juvenile Arthritis. Others had originally been diagnosed with one of these diseases, yet been re-diagnosed with another. Yet some had dual, even triple diagnoses, while many were struggling to get just one diagnosis. 

The conversations moved from email to online, as community Facebook groups and blogs continued to form at rapid speed.  For the first time, people affected by these diseases were able to communicate with one other outside of their immediate communities, and it was exciting!  It was also the first time we were able to learn more about our journeys, our struggles, our similarities, our experiences - we were no longer alone. 

It was also the first time we realized that regardless of the diagnosis, we all had were experiencing similar challenges.  This is when it became clear of the need for an international nonprofit that focused only on the small group of autoimmune and autoinflammatory diseases that presented with arthritis as a major clinical component early in onset.

Communication.   Through online conversations via social media, we identified the following core issues that justified the need to become a nonprofit:

• Several people do not meet "text book" diagnostic requirements so they may experience unnecessary delay in diagnosis, go undiagnosed, or given an incorrect diagnosis simply to jumpstart a treatment protocol;
• Some people were re-diagnosed by different doctors, others had diagnosis removed altogether (i.e. "not believed" or "better on treatments/no proof");
• There are over 100 diseases that are either autoimmune or autoinflammatory, but only a small percentage are arthritis as a clinical presentation either at onset or early disease ( < 12 months).    Focusing on the arthritic component could expedite detection and diagnosis, resulting in better quality of life, less disability, and higher rates of remission;
• There is a need to differentiate arthritis types, particularly between the type that occurs with autoimmune/autoinflammatory diseases and having osteoarthritis;
• There are too many gaps in existing education, advocacy, and research efforts which could be solved if those living with the diseases were invited to give their perspectives.

The results of these conversations have since become the heart and soul of our current day business model and are at the core of our mission and vision.  Then, through continued conversations with our community, we identify the most pressing immediate issues and they become our annual initiatives to solve.

Leadership.    In addition to Tiffany, Tami Caskey Brown and Amanda John were original co-founders,  joined by Kelly Conway in 2013, when the organization expanded our platform and programs.  All co-founders have strong backgrounds in business or education and more recently have been getting involved in research.  Since becoming a nonprofit, several of our volunteers who lead projects have professional experience, which enables us to successfully serve as a communicative bridge between various stakeholders and a global pool of patients and their supporters.