What’s in a Name?
When we first formed our non-profit organization, there were only a few identified or classified systemic autoinflammatory diseases and NOMID was the most severe of the known autoinflammatory diseases. At that time, the known autoinflammatory diseases were also referred to as “hereditary periodic fever syndromes”, which included familial mediterranean fever (FMF), hyperimmunoglobulinemia D (HIDS), Tumor Necrosis Factor (TNF)-associated periodic fever syndrome (TRAPS), and cryopyrin-associated periodic fever syndromes (CAPS). CAPS includes: familal cold urticaria syndrome (FCAS), Muckle-Wells syndrome (MWS) and neonatal-onset multisystem inflammatory disease (NOMID, aka CINCA). Also, periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis (PFAPA aka Marshall syndrome) was recognized as a periodic fever syndrome.
We were encouraged by a few doctors to use NOMID in the name to get more awareness for the severity of autoinflammatory diseases and these greatly under-diagnosed syndromes. Before there were FDA approved treatments, or clinical trials for these helpful medications for CAPS, 20% of patients with the NOMID form of CAPS died before adulthood. Survivors suffered from significant damage to multiple organ systems in their body, including the brain, mental and cognitive delays or disabilities, joint deformities, stunted growth, hearing and vision loss, anemia, systemic inflammation, and failure to thrive.
Originally, we wanted to name our org something else, instead of The NOMID Alliance. We had contemplated Autoinflammatory Alliance, Inflammasome Alliance, Cryopyrin Alliance, and many other names.
We decided to take the suggestion of the doctors and went with NOMID Alliance. The “Alliance” part of our name was to represent our concern for all autoinflammatory diseases by our original board members who were either patients with a form of CAPS, or parents of a child with CAPS (most with NOMID). We felt that we were an “alliance” of people coming together through our connection with NOMID and CAPS, focused on trying to help all patients with with autoinflammatory diseases.
The NOMID Alliance was the first non-profit organization formed in the U.S. to address these diseases, and we started with content on our site about all the known autoinflammatory diseases at that time, plus information about some diseases that were similar (and are now classified as autoinflammatory diseases).
So, we have always been pursuing the same mission and objectives, but we have encountered many people who were confused by the name. Looking back, I would have made life a lot simpler if I had gone with my “gut instinct” and chosen to have the more broad name from the beginning. But in other ways, we have been very happy with the name and what it has symbolized.
Since we were still on track with our efforts for all autoinflammatory diseases, the patient community, medical professionals, and many others really did not concern themselves at all with what we called ourselves, we just went along with The NOMID Alliance name for a lot longer than planned. We were more focused on achieving our efforts and helping people and put our energies into those pursuits.
Looking forward, we hope that the new name, the Autoinflammatory Alliance, will help everyone to better understand who we represent and also drive more awareness for this growing classification for diseases that are still largely unknown to many medical professionals, and the community at large.
The process of going through a name change has been a worthwhile, but challenging experience. There are a lot of things that a non-profit must do for a name change with the local, state and national level, and we still have much more to do during this transition. But our goal remains the same–we are still about helping patients of all ages with autoinflammatory diseases, and getting more awareness, and improved care and treatment for these diseases. More information about our mission and goals is on our website.
The Autoinflammatory Alliance is a 501(c)(3) non-profit organization dedicated to helping those with autoinflammatory diseases.