Kay Connelly, MGA member and co-chair of the Ann Arbor Support Group, sent the following information to the MGA office on an FDA approved drug treatment for generalized myasthenia gravis. It is called Soliris and Kay received the information through mda.org.
We have some exciting news to share with you: The FDA has approved Soliris to treat adults with generalized myasthenia gravis.
Soliris is a terminal complement inhibitor that targets a part of the immune system called the complement system, which is responsible for helping antibodies clear damaged cells and potentially toxic microbes that could cause infections. In MG, antibodies whose job it is to target these toxic pathogens instead inappropriately recruit the complement system and target the space across which nerve fibers transmit signals to muscle fibers, called the neuromuscular junction (NMJ). Soliris is thought to work in MG by inhibiting the complement pathway to prevent destruction of the NMJ. Soliris is not a cure, but it may lessen the symptoms experienced by people living with generalized MG.
For more on this exciting news, read FDA: Soliris is Approved to Treat Generalized MG in the United States, and be sure to check back at mda.org for updates.
At the present time, Soliris is very expensive.
By: Kay Connelly
Sosin Education Symposium – October 22, 2017
Kay Connelly provided information about diet/exercise and the struggles with the neuromuscular disease myasthenia gravis. The information was well received and many questions followed, providing an opportunity for Dr. Raina Ernstoff to provide additional input. Kay firmly believes that it has helped her improve her stamina as well as initiating a healthier lifestyle.
You can review the presentation on diet and exercise for those with myasthenia gravis by clicking here or request a copy of the DVD from the MGA Office by calling (248) 591-4419.
Kay Connelly graduated from The Ohio State University in 1985 with a B.S. degree. She was diagnosed seronegative MG in 2003. She is actively involved in our Ann Arbor support group. Kay loves to travel with her husband Will who is a pediatrician, and she adores her two terriers. She was diagnosed with Sjogren’s Syndrome, an autoimmune connective tissue disease, this past January.
The Sosin Education Symposium was held on Sunday, October 22, 2017, at the Inn of St. Johns in Plymouth, Michigan. Everyone enjoyed a great meal, followed by the awards presentation and speaker.
The Sosin Award was presented to Dale Shomo for his service on the MGA Board of Directors, chair or co-chair of MGA special events along with his wife, Diane, as well as many volunteer positions with MGA. Dale continues to promote MGA to family and friends and is also a Vietnam Veteran, having served our country with distinction. Congratulations and thank you for your service, Dale!
The Volunteer of the Year Award was presented to George Kingston for his many years of volunteerism at MGA, especially the golf outing, where he made an excellent golf hole spotter! George does not live in the area and travels very early in the morning to help out at our events, offering to help wherever needed. George also donates to MGA via the United Way campaign at work and has designated donations annually to MGA, which are matched by General Motors. Congratulations and thank you, George, for all you do!
You can request a copy of this event on DVD from the MGA Office by calling (248)591-4419.