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.
MGFA -- Established in 1952 is celebrating 60 years of service to the MG community. We have produced a special polo shirt with the anniversary emblem(pictured above). These Addidas high quality, highly breathable fabric shirts wick moisture away from the skin for quick evaporation and comfort for the wearer. The shirts are available for purchase for $40. To order your anniversary shirt click here.
The MGFA and the MSAB wish to inform MGFA members and others in the MG community that ambenonium chloride (Mytelase) will no longer be produced. This is an older acetylcholinesterase inhibitor and is rarely used in clinical practice. Pyridostigmine (Mestinon) has been the mainstay of anticholinesterase therapy for many years in myasthenia gravis. If you have been taking ambenonium, please contact your treating physician for available alternatives. To read the statement from Sanofi regarding Mytelase click here.
The mission of ITMIG is to promote the advancement of clinical and basic science pertaining to thymic and other mediastinal malignancies and related conditions. ITMIG is an academic organization that provides structure, organization and scientific rigor to research in these diseases. ITMIG has been embraced by other professional organizations in related fields, including the Myasthenia Gravis Foundation of America. For more information click here.
Thymectomy being tested at multiple centers - Patients Needed
The National Institute of Neurological Disorders and Stroke is funding a phase 3 trial of a surgical procedure known as a thymectomy — removal of the thymus— in an estimated 150 adults with myasthenia gravis (MG) at 50 sites throughout the United States and other countries. Currently, almost 120 patients have been enrolled worldwide, but more patients are needed to complete the study. Recruitment will continue through November 2012.
Removal of the thymus, an organ located in the chest that plays a role in the immune system, has been used for many years as a treatment for MG, an autoimmune disease. However, conclusive data on its effectiveness are lacking.
This study seeks to gather data on whether thymectomy plus the steroid drug prednisone is more effective than prednisone alone, and whether the amount of prednisone required to control symptoms differs when a thymectomy has been performed.
Prospective participants must be 18 to 65 years old, meet diagnostic criteria for MG, have experienced onset of generalized MG within the last five years, not have a tumor in the thymus (thymoma) and meet other study criteria.
Study participants will be randomly assigned to receive treatment with prednisone alone or to receive prednisone plus a thymectomy; they'll be followed for at least three years. Learn more here.
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.
Gil Wolfe, MD, a leading authority on neuromuscular disorders and Chair of the Myasthenia Gravis Foundation of America MSAB, has been named the Irvin and Rosemary Smith Professor and Chair of the Department of Neurology. Read more here.
Saint Louis University investigators will look at a new option for patients with myasthenia gravis, a highly debilitating chronic autoimmune disorder that causes severe muscle weakness and fatigue. Read more here
The MGQOL15 survey is designed to assess aspects of quality of life related to Myasthenia Gravis. Read more.
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 new 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.
2013 National Conference
May 8-10, 2013
Intercontinental at Miami Doral Miami, Florida
Stay tuned for additional details.
2012 National Conference
Bally's Hotel Las Vegas, Nevada
To view the conference videos 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.