Although this June may still look and feel different from years past, we’re pleased to spread awareness together with the myasthenia gravis (MG) community in honor of Myasthenia Gravis (MG) Awareness Month. MG is a neuromuscular condition that causes the body’s immune system to mistakenly target the connection between the nerves and muscles, resulting in symptoms such as drooping eyelids and double vision, as well as severe muscular weakness that can result in life-threatening failure of the muscles that help with swallowing and respiration.¹ For those affected, these MG symptoms can regularly interfere with aspects of everyday life.

This month, we have an opportunity to elevate the voices and needs of people with MG who remind us each day that our collective efforts can directly impact the everyday lives of MG patients – especially during times when immunocompromised individuals can face even more challenges than usual. One of those voices, Glenda Thomas, recently interviewed Omar Sinno, MD, MBA, Medical Strategy Lead, Rare Diseases and Petra Duda, MD, PhD, Head of Development, from UCB on our commitment to people living with MG.

Glenda was also recently appointed and publicly sworn in as the first-ever MG advocate to the newly-established Rare Disease Advisory Council of Massachusetts. Nominated by the Myasthenia Gravis Foundation of America (MGFA) and UCB, Glenda is an MG patient, advocacy leader, and volunteer. This advisory council will give rare disease patients, families, caregivers, providers, and other stakeholders an opportunity to make formal proposals to the state on how to improve public policy for people across the community.

 “I am extremely honored by this appointment and am excited to make sure patient voices are heard across the rare disease space and throughout governmental legislative decision-making processes,” said Ms. Thomas. “It is so emotional and satisfying for me, my family and my myasthenia gravis support family and friends that I have been given this honor just a few days before MG Awareness Month in June – a time to raise awareness and take action to ensure people around the world understand the challenges that people with MG face every day. We must always make sure that legislators come to empathetic decisions when considering treatment access, insurance coverage, and general policy changes that will impact and help those with rare diseases such as myasthenia gravis.” Hear more of Glenda’s story in the video above. 

UCB is focused on making a difference in the lives of patients living with rare disease, like MG. Patients are at the heart of everything we do, inspiring us, driving our scientific discovery, and leading us to rethink the patient experience.

“I’m passionate about providing support and medicines to people living with rare disease because like many debilitating conditions, it’s personal, and has also affected our UCB family,” says Mike Davis, Head of U.S. Neurology at UCB. “When I hear stories from people living with uncontrolled Myasthenia Gravis, similar to stories I’ve heard from people living with uncontrolled epilepsy, it reminds me why we fight every day to tackle these diseases so that patients can live the lives they choose.”

We hope you will join us in virtually celebrating MG Awareness Month. Consider taking part in raising awareness and empowering the MG community by supporting the activities of the MG community in your country or sharing your own experiences via social media.

Learn more about MG:

• Disease Spotlight: Myasthenia Gravis
• Jennifer’s Story: Living with Myasthenia Gravis (And Video)
• Myasthenia Gravis Infographic

Reference

1. National Institute of Neurological Disorders and Stroke. Myasthenia Gravis Fact Sheet. https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/Myasthenia-gravis-fact-sheet (Last accessed: 26th May 2020)