UCB Celebrates Patient Strength During MG Awareness Month
Posted byDonatello Crocetta, UCB Rare Disease Organization
At UCB, we are committed to developing a deep understanding of patients and their lived experiences, especially within rare diseases like myasthenia gravis (MG).
Each June, MG Awareness Month is another opportunity for us to listen and learn from people living with MG, their loved ones, advocacy organizations and healthcare providers. MG is a rare, chronic, auto-immune, neuromuscular disease associated with muscle weakness and is often referred to as the ‘snowflake’ disease. The disease differs widely from person to person, making no two journeys alike, similar to how each snowflake is unique.
Two of our MG patient ambassadors, Dale and Greg, have shared their personal stories of strength with us and their passion to not give up.
More than five years ago, Dale first started experiencing MG-related symptoms. After meeting with a neurologist who ran a series of tests, including an electromyography (EMG) and bloodwork, Dale was diagnosed with MG in 2015. Years later, Dale still experiences MG symptoms. Despite his diagnosis and having limited energy, Dale maintains a positive mindset and enjoys spending quality time with his family.
However, no two MG stories are alike. Greg’s journey with MG was very different from Dale’s. Greg first began experiencing slurred speech, another MG-related symptom, in the summer of 2002. He was then diagnosed with the condition later that year. Despite meeting with multiple doctors, Greg was left without a confirmed diagnosis. Finally, Greg was diagnosed with MG by his neurologist, and thus began a trusted 20-year relationship between doctor and patient. Although he often experiences weakness in his limbs, Greg still makes an effort to be active daily by taking walks with his dog, even if it’s just for a short distance.
It’s people like Dale and Greg who continue to fuel our ambition to further advance treatment options and support the MG patient community.
UCB MG Patient Ambassadors, Dale and Greg
This June, UCB will be encouraging our employees (and their families) to design and share their most creative ‘snowflake’ interpretation. In the spirit of this year’s MG Awareness Month theme, “Turning Awareness into Action,” we will choose one winner to select an MG organization to receive a charitable donation from UCB.
UCB is proud to stand with the MG patient community all year long, not just during MG Awareness Month. The UCB team has also helped connect the Myasthenia Gravis Foundation of America (MGFA) with global partners to build a larger, more diverse platform and help bring new opportunities to the community, through digital innovation, patient disease state awareness, Rare Disease Advisory Councils, and connecting industry peers. MGFA named UCB as Corporate Partner of the Year in April for these ongoing efforts in support of our shared mission to help patients and their families manage the difficulties of living with MG.
We hope you will join us in celebrating the strength and perseverance of the MG community this month.