The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA serves patients, their families and caregivers through a network of chapters, support groups and programs. Each chapter shares the vision of a world without MG.
Myasthenia gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. To learn more click here.
The leading neurological magazine, Neurology Now, has advertised MG June Awareness Month in their June/July 2014 issue in the "resource central" section. Please make sure to pick one up and check it out today. Read more here.
Twenty something MG patient & Orlando MGFA Support Group member, Rebekah Dorr of Orlando, FL was recently interviewed by radio host Beth Perrell of WDBO talk radio. Rebekah and her father, David Dorr, the Orlando Support Group Leader, talked with Beth about Rebekah's journey with Myasthenia Gravis and how others can find resources and help. To listen to the show visit: https://soundcloud.com/rebekah-dorr/mg-awareness-with-rebekah-dorr?utm_source=soundcloud&utm_campaign=share&utm_medium=facebook.
Alfred Jaretzki III, Professor Emeritus of Clinical Surgery at Columbia Presbyterian Medical Center in New York City died at age 94 on May 29, 2014. He was also a valuable member of Myasthenia Gravis Foundation of America’s Medical/Scientific Advisory Board. Read more here.
The Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT) is currently looking for people with myasthenia gravis (MG) to be part of a research study.
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Additional Rituximab Study Information
We would like to welcome MGFA members to a new column that will appear quarterly. Our goal is to highlight some of the latest developments in research related to neuromuscular junction disorders. Every column should include new developments in myasthenia gravis (MG), but we will be covering other disease states as well. For this inaugural column, we will lead with congenital myasthenic syndrome. Read more here.
The Nurses Advisory Board is now offering an online Continuing Education program for 2 contact hours for Nurses. For more information on how to participate, please click here.
We are pleased to announce the publication of the "Clinical Practice Guidelines for the Care of Patients with Myasthenia Gravis" for nursing professionals caring for patients with MG. The guidelines were fully funded by a grant from the Myasthenia Gravis Foundation of America, Inc. Please see the complete Myasthenia Gravis Foundation of America and American Association for Neurological Nurses press release here.
The AANN webcast recording from the "Care of the Patient with Myasthenia Gravis" is now available. Please click here to listen.
The Myasthenia Gravis Foundation of America requests submission of proposals to support pilot studies that are highly focused and innovative with a clear plan that will lead to new federal, pharmaceutical, or private foundation supported investigations. Learn more here.
Dr. Ted Burns from the University of Virginia and a member of the M/SAB is producing a series of patient oriented podcasts for MGFA with information on the diagnosis, treatment, and management of MG. A podcast on The Benefits of Exercise in the Care of Patients with Myasthenia Gravis was produced in March 2012. To view and listen to the podcast series, click here.
2014 National Conference
The 2014 National Conference was held at the Loews Philadelphia Hotel.
To view the National Conference Video Presentations click here.
There is no known cure for MG, but there are effective treatments that allow many-but not all-people with MG to lead full lives. Although the treatments will not cure MG, patients may have significant improvement in their muscle strength.