By Richard Sperry, Chief Strategy Officer, GBS CIDP Foundation International  

I recently shared my journey as a patient living with multifocal motor neuropathy (MMN) with a group of students at my daughters’ high school. To illustrate how rare MMN is, I showed them a picture of Citizen Banks Park, the Philadelphia Phillies’ home stadium. All the MMN patients in the country (approximately 4,000 of us) would fill only a handful of sections in the stadium’s lower tier. Even on a Friday afternoon, the students were engaged and asked lots of good questions. “What is it like to live with a rare disease or condition?” was one. The word I generally use to answer that question is “isolating.”  

In early 2020, when I was diagnosed with MMN—an autoimmune disorder affecting my motor nerves—I experienced a tremendous sense of relief, as the diagnosis corrected a frightening misdiagnosis of ALS, a devastating terminal illness. That relief, though, shifted over time. The reality of living with a treatable but progressive condition that I would have for the rest of my life sunk in. Lots of questions entered my mind. How fast or slow will my MMN progress? Will I continue to respond to treatment (intravenous infusions of immunoglobulin)? How do other MMN patients manage their condition, both from a physical and mental perspective? Even in a digital and virtual world, I struggled to find answers to these questions. More significantly, I struggled to find connection and support, and I felt increasingly isolated. I had been living with MMN for two years and still had not met another MMN patient. 

Thankfully, I found the GBS CIDP Foundation International, the patient organization that supports those impacted by immune-mediated peripheral neuropathies like MMN. I joke with the Foundation’s marketing team that they must have very effective SEO (search engine optimization) because a link to the Foundation’s website appeared at the top of search results for “MMN.” Reaching out to the Foundation introduced me to a whole new community and support network. I met another MMN patient for the first time (Clive Phillips, whose inspiring story and Tour de MMN challenge can be found here) and got to know many others. The Foundation connected me with my current neurologist, an expert in MMN. I attended the Foundation’s Patient Symposium in 2023 and had the chance to interact with thought leaders in the peripheral neuropathy space. In short, I experienced firsthand the Foundation’s unofficial mantra: No one walks this journey alone. 

Late last summer, I joined the Foundation as its Chief Strategy Officer. This role allows me to leverage my professional experience and perspective as a patient to help the organization reach and impact more patients. As we think about our organizational growth and evolution, the Foundation is grateful for our relationship with the National Health Council. The NHC allows us to connect with patient organizations working through similar strategic questions (the role of AI, reaching underserved patients, optimizing advocacy efforts, etc.) and brings organizations together to elevate the patient voice. Just as no patient should walk their journey alone, patient organizations are stronger when united, and the NHC provides us with a platform for coming together. 

February is MMN Awareness Month—a time to spotlight Multifocal Motor Neuropathy (MMN). Learn more and support those living with this rare condition here.