2022 afforded me one of the coolest experiences of my life. I was able to join UCB Pharma at their Rare Disease Connect in Neurology Conference in Madrid, Spain. The purpose of my attendance was to be able to share some of the experiences from the Myasthenia Gravis Association, as an organization for rare disease and regarding those we serve in the community. I was honored to share the stage with other colleagues also dedicating their careers to myasthenia gravis, Dr. Pushpa Narayanaswami of Harvard University and Jude Kings, RN, Wessex Neurological Centre in Southampton, General Hospital in Southampton, UK.
As I sat and listened to colleagues speak from across the globe, mind you in the smaller setting we each had a headset attached to an iPad so we could speak and listen in our fluent language, one of the biggest takeaways was no matter where you are living with myasthenia gravis, we are faced with many of the same challenges and burdens.
Each organization in some way shape or form, has the same mission at heart, to find a cure and to raise awareness. No matter what spoken language is or how the service is delivered, each organization is working tirelessly to support patients impacted by this rare disease. I was blown away by the hands on, grassroots, the volunteerism, and the dedication to each one of these organizations.
I feel honored to have gotten the privilege to meet so many of these dedicated individuals and know that I will continuously learn from them, as well the MGA will reap benefit. While we are small but mighty, we are in good company across the globe with other dedicated partners.
Sometimes it feels like you are living in your own little world dealing with myasthenia gravis, a disease that doesn’t roll so easily off the tongue and is difficult to describe to others, however this opportunity reminded me of the hard work that is being done to make a better life for all of us!