I was diagnosed with myasthenia gravis at age 5. The depth and severity of my disease did not become apparent to me, I don’t think, until I was a teenager. Over the course of the last many years, there have been lots of times where I felt very little hope and that my light had been dimmed. As I have grown older and more seasoned in my journey with a rare disease, I know it is just part of the roller coaster.
However, last week with the help of many dedicated partners, we were able to let our light shine a little brighter when Union Station in Kansas City was lit teal in honor of myasthenia gravis awareness month. Coming off the heels of celebrating our organization’s 60th birthday, the skyline of Kansas City was capitalized with the iconic building standing teal.
As I stood at the Liberty Memorial and gazed out over the skyline, I couldn’t feel prouder of my journey and of the impact the Myasthenia Gravis Association has had on the rare disease community. There are 60 years of rich history intertwined throughout the heartland of dedicated staff, board of directors, medical advisory committee members, professionals, patients, and families who have all worked to lay the foundation to keep the glimmer of hope going.
(Kansas City's Union Station lit teal in honor of Myasthenia Gravis Awareness Month)
While the light didn’t shine bright for a lot of people in 2020, a lot of pieces are coming back together as a re-emergence from COVID-19 begins. I hope this glimmer of light is a reminder of all the amazing things that are happening in our MG community right now. There are a handful of clinical trials of new potential treatments. There is one in fact, in the FDA pipeline for hopeful approval by the end of the year, and there are numerous ways to connect with groups across Kansas, Missouri, and NW Arkansas both in-person and virtually. Remember, when your light starts to flicker and you feel you are losing hope, think of the community that surrounds you. It takes a village to fight myasthenia gravis and we are all on this journey together. Keep shining, friends.
The following blog post was written by Allison Foss, Executive Director of the Myasthenia Gravis Association.