The Myasthenia Gravis Foundation of Illinois is proud to announce grant award winners for 2015-2016.
John Yi, PhD, Duke University, will receive $88,000 for his pilot study, “Profiling of ACHR-Specific B Cells in Myasthenia Gravis.”
Henry J. Kaminski, MD, George Washington University, has been awarded $88,000 for his pilot study “Evaluation of IL-17A as a Therapeutic Target for Myasthenia Gravis.”
Betty Soliven, MD, University of Chicago, will receive $88,000 to continue her study, “Regulatory B Cells in Myasthenia Gravis,” for a second year.
These research projects were chosen for funding because they represent unique, novel ideas that may open significant new avenues of research for myasthenia gravis.
Congratulations!
Rituximab and MG Study: Participants Needed
Posted by myasthenia
A Phase II Trial of Rituximab in MG is being conducted at multiple locations in the U.S. The study is being led by Dr. Richard J. Nowak at Yale University School of Medicine. It is a multi-center randomized, double-blind, placebo-controlled clinical trial. The study is coordinated by NeuroNEXT, the Network for Excellence in Neuroscience Clinical Trials, with support and funding from the National Institutes of Neurological Disorders and Stroke (NINDS), a division of the National Institutes of Health (NIH).
Northwestern University’s Department of Neurology in Chicago is one of the sites where the study is being conducted. For a list of other sites, visit www.clinicaltrials.org and search on “NCT02110706.”
What is the purpose of this study?
The study purpose is to learn if rituximab is a safe and effective drug for people with myasthenia gravis who are on prednisone. The study will determine if rituximab will help people take less prednisone to manage their myasthenia gravis or possibly be able to discontinue prednisone.
What is a placebo-controlled clinical trial?
A placebo-controlled clinical trial means there will be two groups of people being enrolled in this study. Twenty-five people will receive the study medication (rituximab) and the other 25 people will receive a placebo (an inactive salt-water infusion).
What is Rituximab?
Rituximab is a type of medicine known as a monoclonal antibody (MAB). It works by reducing white blood cells called B cells.
How is Rituximab given?
Rituximab is given through a needle inserted into a vein; this is called an infusion.
What will happen if I choose to be in the study?
Your first visit will include a review of the informed consent form. If you choose to be in the study, we will do various tests to make sure it is OK to include you in the study.
You will get rituximab or placebo infusions weekly during the first four weeks of the study and during weeks 24 through 27 of your participation.
You will come to regular study visits every 4 weeks. At these visits, you will have an MG-focused physical examination and complete questionnaires. Blood samples will also be drawn at each visit.
Who is eligible for the study?
You must be 21 to 90 years old
You must have a diagnosis of generalized MG
You must already be taking a stable dose of steroids
The study coordinator will provide you a full list of requirements for participation.
If you live near Chicago, Illinois and would like more information about participating in this study please contact Bartosz Jacher, Clinical Research Coordinator at Northwestern University Department of Neurology, bartosz.jacher@northwestern.edu or 1.312.695.8636.
To learn about participating at other sites, contact Hong Vu, Yale clinical research coordinator, at hong.vu@yale.edu or 1.203.737.6385.
“But You Don’t Look Sick”
Posted by myasthenia
Peggy Cashman – 2014
Myasthenics often hear, “but you don’t look sick.” Here I am living with a chronic autoimmune disease myasthenia gravis, and most people don’t know. I always thought that was pretty neat. When I was a young girl the letters “MG” meant a snappy little sports car. My roommate Jerry Mitchell owned an MG convertible. One day I was driving it down Harry Hines Boulevard in Dallas, TX and was suddenly surrounded by very large trucks, both sides, front and back. When we stopped for a red light and the brakes were applied, I felt as If I would be lifted off the ground. I was young enough to think it was fun.
Today, MG has a new meaning, myasthenia gravis. There was no pain. When slurred speech, shortness of breath, and swallowing became more difficult, I was finally diagnosed with severe generalized myasthenia gravis. After an immediate thymectomy, (that was in December, 1978 long before robotic surgery), I could eventually live a normal life with two active teen-agers and a husband who was very supportive, but traveled often.
I kept a record of my life with MG, hoping that someday my children could better understand the changes at home during that difficult time. With time on my hands I researched my disease. I was motivated to write. My notes became a manuscript and eventually a book, “THE MYSTERY GUEST, MG” A Personal Plan for Dealing with a Chronic Illness. My friends gave a book signing party and sold over a hundred books. I wanted to give them the book but that was not their plan.
Over the years my friends wanted to learn about Myasthenia Gravis. With medication, I could play tennis and golf but they noticed I would tire sooner than before I had MG. Without hesitation they always included me knowing that at a large party in their home, I could quietly find a bedroom, close the door and rest for 30 minutes before returning to the party. It wasn’t long before we were entertaining again.
Bad things happen to almost everyone at some time in their lifetime. It is how they deal with these life changes that makes the difference. Dealing with the emotional aspects of having a chronic illness is a challenge and has many ups and downs that can be emotionally draining. How you handle this emotional roller coaster is important and personal.
A recent MG crisis brought back memories. It’s been another challenging few months. Cellcept and prednisone are prescribed and gradually I am gaining control of MG again. My patience is growing.
We live at Park Place of Elmhurst where many are young and most are young at heart and some have never heard of myasthenia gravis. They have they own challenges. Again, I am hearing, “but you don’t look sick.” I can smile and know it’s ok, remembering they too are dealing with their Mystery Guest.
