Upcoming Support Group Dates

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1 Having trouble viewing this ? Click here Upcoming Support Group Dates Chicago - Central Saturday, February 9, 2013 Chicago - North Chicago / Near North Suburban Spring, TBD Chicago - South Suburban Sunday, February 10, 2013 Chicago - West Suburban Sunday, February 17, 2013 Peoria Sunday, April 21, 2013 Rockford Saturday, April 13, 2013 Springfield Sunday, January 20, February 17 and March 17, 2013 NW Indiana Saturday, March 2, June 1, Other dates TBD Ames, IA Saturday, February 9, 2013 For detailed information about listed support group dates, click here. Happy NEW Year We'd like to introduce you to our NEW MG Minute. It's part of our 2013 plan to "go greener" while continuing to provide you with vital, useful MG news. We'd also like to introduce you to MGF of Illinois' NEW executive director, Joan Wincentsen. She served on the board for five years and joined the staff in At the same time, MGF of Illinois extends heartfelt thanks to Kim LaBounty, our outgoing executive director. We're grateful for her strong, innovative leadership and enthusiastic patient response. Click HERE to read messages from Joan and Kim. Feeling Lonely? If life were a stadium, MG wouldn't fill many seats. That's what writer Marie Smith concluded when she looked for others who live with this rare disease. On her blog Joy Benchmarks, she begins, "I live with both diabetes and MG." Click HERE to read the rest of her post, reprinted with permission. Can a Virus Trigger MG? This is the question explored by the combined Inserm/CNRS /Pierre and Marie Curie University/Association Institut de Myologie in their study "Therapies for diseases of striated muscle." Through the project known as FIGHT-MG, financed by the European Commission and coordinated by Inserm, Sonia Berrih-Aknin and Rozen Le Panse have contributed proof of the concept that a molecule imitating a virus may

2 Meet Our Supporters trigger an inappropriate immune response, causing muscular function to deteriorate. Their study results have been published in Annals of Neurology. Click HERE to read the full press release. Find us on Facebook Connect with MGF of Illinois on Facebook to receive the latest updates, share stories and network. Forward to a Friend Share this information with a friend Via our partner page with Apex Management Contact Us MG and Diet This is one of the most frequently searched topics on our website, We'd like a magic MG bullet. Instead, medical advice is consistent: myasthenics, like everyone, should eat a healthy diet and maintain a healthy weight. While the advice seems common, it is especially true for myasthenics. Extra pounds make it even more fatiguing to get around and aggravate a host of other diseases. But in the face of appetite magnifiers like prednisone, we know it can be especially challenging. Click HERE for a few simple ways to keep your New Year's resolve for a healthy diet. Myasthenia Gravis Foundation of Illinois 310 W. Lake Street, Ste. 111 Elmhurst, IL info@myastheniagravis.org Phone: Toll Free: This was sent to klabounty@planattorney.org by info@myastheniagravis.org Update Profile/ Address Instant removal with SafeUnsubscribe Privacy Policy. Myasthenia Gravis Foundation of Illinois 310 W. Lake Street Suite 111 Elmhurst IL 60126

3 Myasthenia Gravis Foundation of Illinois, Inc. 310 W. Lake St., Suite 111 Elmhurst, Illinois Toll Free: Fax: Member Agency Community Health Charities of Illinois Messages from Our Executive Directors A note from Kim LaBounty I m so excited that beginning January 1, Joan Wincentsen became the Executive Director of this great organization Joan brings a wealth of experience in a variety of capacities, from consulting to volunteering; as staff and a former board member. Joan s vision, passion and desire to take MGF of Illinois to the next level are so exciting. I am confident she will do a fantastic job, to the benefit of all we serve. I think this change also speaks well of the Board of Trustees, who recognize one way to move the organization forward in a significant fashion is to direct additional resources toward a full- time staff presence. You see for the last six years or so, MGF of Illinois has been operating on an average of hours per week of staff time, and there is only so much that can be done in that amount of time. Case in point, I received a letter back in 2008 from someone and have kept it on my bulletin board ever since. It said, Dare to be bold. Set some goals that will challenge everybody. It s hard work and scary, but MGF of Illinois can and should be doing ten times what it is doing. MGF of Illinois not only has to ensure our own state is serviced, but we recognize other gaps that need to be filled as a result of declining organizational presence in neighboring states. We need to do more. Joan s impact has already been felt, with increased outreach to Spanish- speaking communities, through presence at health fairs and a variety of new relationships formed. Additionally, Joan was a primary reason our 40 th Anniversary event and programs last year were successful. She has great things planned for 2013, including a walk to raise awareness and funds for the organization, targeted for May/June so get ready to get your team together Joan will continue to work with our Medical Advisory Board Members in funding research, and increasing overall donations so MGF of Illinois can be of great impact. I have appreciated the opportunity to serve as your Executive Director over the past six years. It has been an honor to be part of our research funding efforts, educational programs and the opportunity to raise awareness and funds to help eliminate MG. I actually won t be far Joan will continue working in the same office as mine in the year to come. I ll be available to assist with recalling past activities, details, and offer support. Your support will be important too SERVICE TO PATIENTS RESEARCH PUBLIC EDUCATION & INFORMATION STRENGTH IN HOPE

4 And from Joan Wincentsen Greetings I m grateful for Kim s kind words, and am determined to live up to them. One of my joys this past year has been connecting with others who want to raise awareness about MG. These people have marched for MG in local parades, arranged for checks to be printed with a Myasthenia Gravis message, staffed health fair tables, and worked with Build- A- Bear to create an MG bear. Their enthusiasm has been infectious. A recent conversation with a thoracic surgeon in Chicago s western suburbs confirmed that raising awareness about myasthenia gravis and about MGF of Illinois is essential. He told me he d been performing thymectomies for 20 years, and had only just discovered our organization. He wished he could have informed his patients earlier about our services. To me, that speaks opportunity. I understand the value of MG connections and resources first hand. I was diagnosed with MG in 1998, and got through some difficult times with the help of others. My MG acquaintances understood what it was like to raise young boys while you re sick and helped me believe I could return to a real job. I referred over and over to brochures I received from MGF of Illinois, and had questions answered at their seminars. I was happy to see MGF of IL- sponsored research projects get underway. And I benefited from joining the MGF of Illinois board. Nothing gets your mind off your own problems faster than helping others. So I invite you to do the same: Use us as a resource. Connect with other myasthenics at a meeting or on our Facebook page. And help us by building a team for our spring walk, serving on a committee, or offering ideas for seminars and newsletter articles. Together we can improve the lives of so many myasthenics. SERVICE TO PATIENTS RESEARCH PUBLIC EDUCATION & INFORMATION STRENGTH IN HOPE

5 Feeling Lonely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7 Can a Virus Trigger MG? Editor s Note : This press release was published in several online sources, including Science Daily and Infection Control Today. Paris, 19 December 2012 Auto- immune disease: the viral route is confirmed Why would our immune system turn against our own cells? This is the question that the combined Inserm/CNRS/ Pierre and Marie Curie University/Association Institut de Myologie have strived to answer in their Therapies for diseases of striated muscle, concentrating in particular on the auto- immune disease known as myasthenia gravis. Through the project known as FIGHT- MG (Fight Myasthenia Gravis), financed by the European Commission and coordinated by Inserm, Sonia Berrih- Aknin and Rozen Le Panse have contributed proof of the concept that a molecule imitating a virus may trigger an inappropriate immune response, causing muscular function to deteriorate. These results have been published in Annals of Neurology, accessible on line. Myasthenia, a rare auto- immune disease Myasthenia gravis is a rare auto- immune disease (5,000 to 6,000 patients in France) that produces muscular weakness and exhaustion. It generally affects the facial muscles first, and may then become generalised through the muscles of the limbs or the respiratory muscles, causing respiratory distress. This is due to the production of circulating auto- antibodies that block the acetylcholine receptors (RACh), these neurotransmitters being necessary for transmitting the motor nerve signal to the neuro- muscular junction. Could a viral infection be the origin of myasthenia? Myasthenia is a multi- factorial disease in which environmental factors seem to play a key triggering role. Viral infections are suspected but it is hard to prove the role of a virus in triggering the condition. In fact, diagnosis of myasthenia is often made months, or even years, after the actual start of the illness when the virus is no longer detectable, even though the signature left by the virus is visible long after the infection. Proof of the concept of a viral origin contributed by researchers Under the European FIGHT- MG project, the team of researchers managed to decode the trigger for the illness by using a molecule that mimics the RNA double viral strand (Poly(I:C)). To do this, they concentrated on the organ that plays a central role in the disease the thymus. It is in this gland located in the thorax that the T- lymphocytes mature, these being the key players in immune response that are normally programmed to avoid the

8 development of any auto- immunity. The researchers were thus able to show in vitro that the Poly(I:C) was capable of specifically inducing an over- expression of RACh through thymal epithelial cells, while activating three proteins (the toll- like receptor 3 (TLR3), the protein kinase R (PKR) and interferon- beta (IFN- â)); it is this last that produces inflammation in the thymus. At the same time, they analysed pathological thymus glands of myasthenia sufferers in whom they observed over- expression of these same three proteins in the immune system, characteristic of a viral infection. Finally, the researchers also managed to identify the same molecular changes in the thymus glands of mice, after they had been injected with Poly(I:C). After a prolonged injection period, they also observed a proliferation in the mice of B anti- RACh cells, the presence of auto- antibodies blocking the RACh receptors and clinical signs synonymous with the muscular weakness found in myasthenia. These original results show that molecules that mimic a viral infection are capable of inducing myasthenia in the mouse, something that had never been demonstrated before. This set of papers published in the Annals of Neurology provides proof of the concept that a viral infection can cause inflammation of the thymus and lead to the development of auto- immune myasthenia. The next stages of the research will consist in determining which exogenous virus this may be or whether it is a case of the abnormal activation of an anti- viral response by endogenous molecules. FIGHT- MG (Fighting Myasthenia Gravis) a European collaboration making giant leaps forward The FIGHT- MG project seeks to determine the genetic and environmental risk factors associated with the occurrence of the illness and its development. The project aims also to identify the key immunological molecules associated with its appearance, and to study the pathogenic mechanisms at the neuromuscular junction, establish new diagnostic tests, as well as new treatments (cellular treatments, immuno- regulatory treatments, immuno- absorption of pathogenic auto- antibodies and other pharmacological treatments). References: Implication of dsrna signalling in the etiology of autoimmune myasthenia gravis Perrine Cufi1, MSc, Nadine Dragin, PhD1*, Julia Miriam Weiss, PhD1*, Pilar Martinez- Martinez, PhD2, Marc H. De Baets, MD, PhD2, Régine Roussin, MD 3, Elie Fadel, MD3, Sonia Berrih- Aknin, PhD1 and Rozen Le Panse, PhD1 1 Combined Research Unit - CNRS UMR7215/INSERM U974/UPMC UM76/AIM - Thérapie des maladies du muscle strié, Groupe hospitalier Pitié- Salpêtrière, 105 Boulevard de l'hôpital, PARIS Cedex 13 - France. 2 Department of Neuroscience, School of Mental Health and Neuroscience, Faculty of Health, Medicine and Life Sciences, Maastricht University, Universiteitssingel 50, P.O. Box 616, 6200

9 MD Maastricht, The Netherlands. 3 Département de Chirurgie cardiaque des cardiopathies, Hôpital Marie Lannelongue, Le Plessis Robinson, France. * These authors contributed equally to this work. Annals of Neurology DOI: /ana.23791

10 Resolve for a Healthy Diet Whether or not losing weight is part of your plan for 2013, your diet could probably stand a little improvement. Consider one (or a few) of these suggestions to keep your resolve going. Over time, making several small changes in what you eat can really pay off. 1. Eat your vegetables. Aw Mom is no longer an appropriate response. You know zucchini and spinach and all that green (and yellow, orange, red and purple) stuff makes you feel better. The USDA Dietary Guidelines for America recommend five servings a day. And the DASH diet declared Best Diet Overall by U.S. News and World Report, bumps that up to 4-5 fruit and 4-5 vegetable servings a day. 2. Keep things in proportion. Take a look at the placemat. Half the plate is filled with produce. Those fruits and vegetables are balanced with whole grains, lean protein and dairy. 3. Don t forget calcium. A study published last year in The Journal of Nutrition found that 38 percent of Americans aren't getting enough calcium, a nutrient essential for keeping bones strong and reducing fracture risk. Since milk is a rich source, try to drink more of it. Sneak in nondairy sources, too, such as dark greens, canned salmon with the bones (they're edible and provide the bulk of the calcium), tofu, and fortified fruit juices and soymilk. 4. And potassium. Take note myasthenics: The body needs this mineral to help nerves and muscles communicate A diet rich in potassium helps to offset some of sodium s harmful effects on blood pressure. Reach for the leafy greens like spinach and collards, vine fruit like tomatoes, cucumbers, zucchini, eggplant and pumpkins and root vegetables like potatoes and carrots, beans, dairy foods, meat, poultry, fish and nuts. 5. Eat three food groups at breakfast. Research shows that breakfast eaters keep off more weight than those who skip the meal. But many morning foods, like cereal, are high in carbs and not much else which won't satisfy your appetite for long. Make sure your breakfast includes lean protein, carbohydrates, and healthy fats. Fat helps you feel satisfied, while carbs provide quick energy to jump- start your body. Protein helps build and repair muscle and is slow digesting, so it keeps you full.

11 6. Eat from a plate, at a table. Grazing on grab food from the cabinets, munching in front of the TV those habits are killers Sit down, put a napkin on your lap, and catch up with your family. You deserve a place at the table. 7. Get enough sleep. This one has nothing to do with food or does it? Getting 7-8 hours a night can help you keep your appetite in check, curb cravings, and reduce late- night snacking. In multiple studies, researchers have found that sleep deprivation sleeping less than six hours a night disrupts the normal levels of hormones that are critical to regulating hunger and appetite.