At UCB, we work to find new ways to deliver solutions to people living with severe diseases because everyone deserves to live the best life they can.

This Myasthenia Gravis Month, I want to share a bit about why this mission isn’t just professional for me; it is personal.

Two weeks after starting in my role for U.S. Rare Diseases at UCB, I discovered that my favorite uncle, Ed Boutelle, had been diagnosed with generalized myasthenia gravis (gMG).

Uncle Ed first knew something was off at age 69, when his eyelids started to droop and his speech slurred. He started to choke on his food, bite his tongue and cheeks, and lose strength in his arms and legs. After receiving his diagnosis, he visited a Veterans Affairs (VA) hospital, as he is a Vietnam War veteran and retired as a three-stripe Sergeant of the U.S. Army 101st Airborne Division. One of my cousins moved in with him to keep an eye on him. When his symptoms exacerbate, he can get confused and slur his speech. For Uncle Ed and his family, there isn’t a day that passes where his gMG isn’t top of mind.

“I have the support I need through the VA, but I think it is important to know how serious these symptoms can be. Not everyone is as lucky as I am to have the VA take care of things in a timely manner,” my Uncle Ed says.

Indeed, the diagnosis and treatment journey for gMG patients can vary. But it starts with awareness.

Please join us as we raise awareness for Myasthenia Gravis Month. 

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