Myastheniagravis.org


The Myasthenia Gravis Foundation of Illinois, Inc.
August 2015
275 N. York Street, Suite 401 * Elmhurst, IL. 60126 * Phone: 1-800-888-6208 * www.myastheniagravis.org MG 101: What Every MG Patient Should Know
Understanding how myasthenia gravis works and can be treated is important for
every MG patient. Here is an opportunity to get a handle on myasthenia gravis e From Your Executive
symptoms, treatments, and promising MG research work. Join us Sunday, October Director, p. 2
25, 2015 at Advocate Lutheran General Hospital in Park Ridge, Illinois, when Matthew Meriggioli, M.D., Professor of Neurological Sciences at Rush University e Strides Against MG,
Medical Center, will explain MG essentials. See the flyer inside for details.
e News, Activity
Updates, p. 4
3rd Annual Strides Against MG Walk
e Courtney Smith,
The MGF of Illinois family-friendly celebration to raise MG Autoimmune Disease
awareness was all set for June 7, but Mother Nature had other plans. Over 100 MG supporters came out to cheer our cause, while the other 100 registrants opted to stay dry and raise e Anesthesia & Surgery,
awareness at home. Even so, our awareness-raising and fundraising efforts were very successful. The local Elmhurst e The Ice Maker Analogy,
newspaper ran an MG story, the event was posted on many online platforms, and many new folks heard the MG message. We doubled our net proceeds compared to last year, too, raising e Research Updates,
$21,000 to serve MG patients. Thank you, walkers, donors, and sponsors! See inside for pictures.
e Generic Mestinon
Timespan, p. 8
e Contributions, p. 9-10
MGF of Illinois Funds Research
e Support Group
We're working with you to create a better future for MG patients. Myasthenia Gravis Foundation of Illinois research grants for 2015-16 have been awarded to: • John Yi, PhD, Duke University, for his pilot study, "Profiling of ACHR-Specific B Cells in Myasthenia Gravis." • Henry J. Kaminski, MD, George Washington University, for his pilot study, "Evaluation of IL-17A as a Therapeutic Target for Myasthenia Gravis." • Betty Soliven, MD, University of Chicago, for second year funding of her pilot study, "Regulatory B Cells in Myasthenia Gravis."


Myasthenia gravis (MG) can From Your Executive Director
strike anyone at any age. MG is a highly misdiagnosed and undi- Occasionally people ask why they are still getting mail from us, even agnosed autoimmune disease in though they contacted the national Myasthenia Gravis Foundation of which communication between America about a change in status. nerve and muscle is impaired, causing weakness. Its primary Like a number of MG patient support organizations, MGF of Illinois is an symptoms are erratic, vary in se- verity and occur in any combina- independent 501(c)(3) nonprofit, not connected to a national organization. tion such as: droopy eye lid(s), We do all our own fundraising to provide strong local (Illinois and northwest double or blurred vision, weak Indiana) services in addition to responses and resources for all who contact arms, hands, neck, face, or legs, us, no matter where they live. For Illinois and northwest Indiana patients,
difficulty chewing, smiling, swal- we offer face-to-face encouragement through local support groups, twice- lowing, talking, undue fatigue, annual patient seminars, and help with medical bills for those who struggle difficult breathing or shallow res- financially. Our local Medical Advisory Board members help us connect piration, or sense of balance dif- patients with area neurologists who are up-to-date on MG treatments. ficulty. MG can masquerade as They also guide our research funding, answer patient questions, review overwork, under-rest, anemia, our website, and provide articles to share with you.
vitamin deficiency, disease of the involved organ(s), or even emo- tional disturbances. Its cause is We are grateful for help from individuals like you who make this happen. unknown; there is no cure.
With a record number of walk participants and donations, and a strong response to our appeal letter, we're getting closer every day to our $50,000 The Myasthenia Gravis Founda- donation target (see page 8). If you haven't yet, please consider contributing tion of Illinois, Inc. was formed to MGF of Illinois efforts, either online at www.myastheniagravis.org or October 29, 1972, by a local by using the enclosed envelope. Your gift translates directly to services for group of caring individuals who myasthenia gravis patients. Thank you! wanted to help patients achieve the best possible quality of life, Wishing you good health, while living with and managing their MG. We are a volunteer-led Joan Wincentsen Executive Director Our Mission: To facilitate the timely diagnosis and optimal care of individuals affected by myas- thenia gravis and to improve their lives through programs of pa- tient services, public awareness, medical research, professional education, advocacy and patient The Myasthenia Gravis
Foundation of Illinois, Inc.
275 N. York Street, Suite 401 Elmhurst, IL 60126-1530 Janet Bauer's Family and Friends Team raises MG awareness! e MGF of Illinois - Conquer, August 2015- p 2 e


e MGF of Illinois - Conquer, August 2015 - p.3 e





MGF of Illinois Honors Volunteers
The Volpe Family was recognized at the MGF of Illinois May meeting for their service to MG patients. Geri Volpe has guided the West Suburban Support Group for years; her daughter, Deb Volpe, has served on the board, co-chairs the Strides Against MG Walk, and has cajoled dozens of family members and friends into volunteering for the event. Geri's daughter Karen "Rise Above MG" Inspires
Volpe is a key participant on the Walk Committee, too. Thank you, Volpe Family! On May 3, over 50 attendees tapped into the inspiration of MGF of Illinois' "Rise Above MG" presentation at Elmhurst Memorial Hospital. Katie Parading and Paddling for MG
Jasmon spoke about her journey from college athlete to emergency room physician assistant where she has Ben Maravilla is a one-man dynamo for raising MG diagnosed others with myasthenia. Mark Grazman awareness in Aurora, Illinois. He and his family entered and Dr. Robert Heller from GH FitLab shared their a "Myasthenia Gravis" float in Aurora's Puerto Rican experiences in helping disabled individuals improve Heritage Parade in July. And for the fourth year, his their overall health with exercise plans that are team will construct and paddle a Myasthenia Gravis "measured and dosed." Last, it was a joy to hear entry in the Fox Valley United Way Cardboard Boat Marie Smith's cello performance as she explained Race. Way to go, Ben! adaptations she's made to still play the music that is her passion. This session was made possible through the generous sponsorship of AxelaCare.
Motorcycle Ride for MG Awareness
On July 11, 2015, MG advocate Kelly Lozada led the "Motorcycle Ride for MG Awareness" with participation of the Latin American Motorcycle Association (LAMA) – Chicago South. MGF of IL chair Bob Rosecrans noted, "Kelly did an OUTSTANDING JOB of organizing the event. We had an Illinois State Police escort from Countryside to the Wisconsin border. The police blocked entrance on the I-294 until we passed, and it was something to see. At the Wisconsin picnic site, they had a DJ, as well as horse shoes and badminton. When Kelly spoke, it brought a tear to my eye and to a number of the riders." Thanks for a successful ride to raise awareness, Kelly! (That's her in the picture, smiling, left of the state e MGF of Illinois - Conquer, August 2015 - p.4 e


Courtney G. Smith
Autoimmune Disease Advocate
MG patient Courtney G. Smith was profiled in the April 1, 2015 online article "Autoimmune Epidemic: Meet the Women Affected," of SELF magazine. Courtney relates how she produced and directed the award-winning 2006 documentary in an effort to raise awareness about autoimmune disease. Her film "Beauty Does Lie: The Untold Story of Autoimmune Disease" explores the lives of seven African American women living with various forms of autoimmune illness. She notes, "I really believe that autoimmune diseases should be included on every medical intake questionnaire. More research is also needed to determine what common denominators among women are causing our immune systems to attack us. On that note, I'd like for autoimmune diseases to be researched collectively instead of individually." When we caught up with Courtney, she explained that she's been dealing with adenomyosis (a painful condition affecting the lining of the uterus), in addition to MG. "Healing is a lot of work," she notes. Yoga has helped her with bone strength and pain. She has been writing a screenplay called "My Healing Journey" and meets with a support group. Her advice is to "find the determination to be active. If you don't work those muscles, they won't function properly. Even if it's just sitting on the couch and waving your hands!" e MGF of Illinois - Conquer, August 2015 - p. 5 e Anesthesia and Surgery in Myasthenia Gravis Patients
By Kourosh Rezania, M.D., Associate Professor Department of Neurology, University of Chicago Myasthenia gravis (MG) is an autoimmune disease caused by abnormal immune reaction directed against acetylcholine receptors or other proteins of the neuromuscular junction. As the result of neuromuscular transmission impairment, MG leads to weakness of eye movements (droopy eyelid, double vision), limb muscle weakness, swallowing difficulty, and breathing impairment. MG is also characterized by a fluctuating course and MG patients often have deterioration of symptoms when they are exposed to certain medications, and stressors such as infections, pregnancy, and surgical procedures. MG exacerbation or crisis (i.e., life threatening respiratory impairment) may arise from the stress of the surgical procedure or as a result of general anesthesia. General anesthesia may cause MG exacerbation or crisis because: i. Neuromuscular blockers (NMB) that are commonly used in general anesthesia further suppress neuromuscular transmission, which is already impaired in MG; ii. There is a possibility of drug interaction between medications commonly used in MG patients (pyridostigmine and azathioprine), and certain anesthetics and NMBs. For example, pyridostigmine blocks the enzyme that is involved in the metabolism of some of the NMBs, therefore prolonging the duration of their action (muscle weakness).
Given the potential for MG exacerbation or crisis after surgical procedures, it is critically important to take appropriate measures to avoid or minimize the occurrence of these complications. The following measures are The neurologist is to be informed when a surgical procedure involving general anesthesia is scheduled. On the other hand, minor surgeries or procedures such as colonoscopy generally do not pose a high risk of MG exacerbation. i. Elective surgeries (including thymectomy) are optimally to be planned when MG is in clinical remission. Patients with active MG and borderline pulmonary function, or those with history of MG crisis after surgical procedures may benefit from a protective course of treatment with either intravenous immunoglobulin (IVIG) or plasma exchange prior to undergoing the surgical procedure.
ii. Anesthesia complications can be minimized by avoiding NMBs and if patients receive NMBs, close monitoring in the postoperative state. Some anesthesiologists have used medications that promptly reverse the effects of NMBs in the immediate post-operative period. iii. Depending on the circumstances, pyridostigmine may be withheld hours prior to the surgery and started in the recovery period. iv. Furthermore, use of local and epidural anesthesia is preferred to general anesthesia in MG patients when possible. On the other hand, postoperative pain is to be treated aggressively as the stress caused by pain itself may potentially cause exacerbation of MG. Reference: Blichfeldt-Lauridsen L, et al. Anesthesia and myasthenia gravis. Acta Anaesthesiol Scand 2012; 56: 17–22 e MGF of Illinois - Conquer, August 2015 - p.6 e The Ice Maker Analogy
Thank You,
June Ballard-Beard Today, when I was getting water from the dispenser on the fridge, it made me think about myasthenia gravis. That might seem quite odd, but the ice maker in this fridge is the perfect analogy to describe what it's like to have MG.
Nancy CrownDave DeFries If you have an ice maker, you know that as long as it is working right, you will have plenty of ice to use how you please. On a hot summer day, you keep refilling that glass of ice water. No big deal.
But what if the ice maker breaks? What if you never know how much you will have or how long it will last? All you know is that you have to conserve the ice to last through that hot summer day. You have to pick and choose how to use it because when it's Kristin Kuhnhofer gone, you may not get anymore until tomorrow, or maybe even the day after that. Steve & Dorothy Litwitz In MG terms, this means we have to plan our days Debbi & Mark Merril and choose which activities we will participate in. Cooking, driving or merely talking on the phone all take a certain amount of "ice." We have to decide Ron & Cheri Richards what is most important and only do those things, even if we are still functioning ok or "look fine." Some of us need to rest both before and after any activity to prevent a trip to the hospital. Literally and figuratively, we must avoid the heat. Lisa Volpe & daughter Megan Val, Kathy, Kamron & Kristen Volpe Now every time I refill my water bottle and Jeff, Ian, and Peter Wincentsen dispense that ice, I will probably think of MG, and I hope you do, too. It's a reminder of the need to conserve our energy for the most important things Calendar Club Winners
February to July 2015
February March April
The Chmielewskis Jennifer Steffgen Thomas Dammrich Donna Kroll Bernadette Stewart Jane Horan Anonymous (2) Anonymous (2) George Omwando May June July
Cindy Klidaras Bruce Bosenbecker Eugene Deutsch Frank Marquett Julie McCracken Helen MacLeod Heather Weber Ashwin Patel Gail Olley Anonymous Anonymous Darlene Perrone e MGF of Illinois - Conquer, August 2015 - p.7 e Research Updates
Dr. Bryan Trayno, chief of Neuromuscular Diseases Research Section at the
National Institutes of Health in Bethesda, Maryland, and his colleagues have compared DNA from more than 1,000 white, North American patients with AChR-positive myasthenia gravis to nearly 2,000 control samples. They were looking for genetic variations associated with a susceptibility to myasthenia gravis. In study findings published online February 2, 2015 in JAMA Neurology, Dr. Traynor and his colleagues report finding three different disease-associated loci in MG patients. One locus was at CTLA4, and the FDA already has approved two treatments that target this site for rheumatoid arthritis and renal transplant patients. Their findings suggest these drugs could be considered for MG patients. Source: http://www.medscape.
Researchers at Shandong University and Shandong Provincial Qianfoshan Hospital in China looked at the effects of cysteinyl aspartate-specific proteinase-1 (caspase-1) inhibitor on myasthenia gravis in rats. Caspase-1 appeared to improve symptoms of MG in the study animals. The study results suggest capase-1 inhibitor may be an important drug target for MG and other autoimmune diseases. Source: Journal of Neuroinflammation 2015, MGF of Illinois funded two pilot studies for the grant period July 2014 to June 2015.
• David P. Richman, M.D., University of California, Davis, "Monoclonal Antibody Treatment of Anti-
MuSK Myasthenia." Dr. Richman reported that he and other researchers have noted that a subgroup of
MuSK antibodies appears to improve, rather than block, the function of MuSK, improving the symptoms of MuSK myasthenia. The goal of his project was to produce and characterize purified antibodies that have only the effect of improving MuSK function. While studying the muscle wasting that characterizes MuSK MG, his team found they were also positioned to investigate lrp4 antibodies in seronegative MG. Using the monoclonal antibody system they had developed for MuSK MG, they also worked to develop and characterize a rat model of lrp4 antibodies. This work opens up new avenues to investigate whether the lrp4 antibody is a cause or biomarker of MG. • Betty Soliven, M.D., University of Chicago, "Regulatory B Cells in Myasthenia Gravis." With recent
evidence suggesting that regulatory B cells (Bregs) play an important role in controlling autoimmunity, Dr. Soliven explored whether MG patients have abnormal frequency or function of Bregs. Her pilot study results found altered frequency of Bregs in human MG. With MGF of Illinois funding, she is continuing a second year of the study to provide further insight into the role of impaired Breg generation in MG. She aims to use an increased sample size to determine if there is a correlation between MG patients' B cell frequency/function and their MG symptoms and treatment. She also will explore whether immunomodulating treatments can restore the frequency of Bregs or improve their function.
Generic Mestinon Timespan Now Available
Many MG patients take the medication Mestinon® to ease their symptoms. It comes in three forms: 60 mg tablets, 180 mg Timespan tablets, and a syrup. A generic form of Mestinon Timespan® is now available under the name Pyridostigmine ER (ER for extended release). Manufacturer Alvogen Inc. has noted it may take some time to get supplies to all locations. Although cost varies depending on your insurance plan, it will be lower than brand name Mestinon Timespan.
e MGF of Illinois - Conquer, August 2015 - p.8 e Special thanks to everyone listed who sent in a contribution from February 2015 through July 2015. Your continuing financial support keeps our organization going! We also thank those who requested not to be listed but sup- port our organization's mission. Please note: deaths of those listed in the "In Memory" section are not necessarily deaths due to MG. Patricia Gilmartin George Koldenhoven Vasiliki Afendakis Christos Konstantelos Eleousa and Georgia Kouimelis Deborah Cunningham Dick and Linda Green Bill and Joan Kretz Nicholas and Lisa Cuzzone Carole and John Ballard June Ballard-Beard Richard and Nancy Darnell Kathleen Langlois Edgar Lara-Guzman Patricia De Chene Michael and Ann Harrington Dorothy and Paul DeBoer Arthur and Faith LaVelle Art and Ruth Lebeau MaryBeth and William Beiersdorf Chuck and Sylvia Leppert Dave and Patti Bennett Roberta Dibasilio Denise Dipasquale Marjorie Lindenmier Jim and Kathy Bingley Susana Guzman-Holland Katie Littlefield Rebecca Bolthouse Steve and Dorothy Litwitz Marga Breckenfelder Charles Lobodzinski Gail and Warren Long Joan and Warren Eagle Illinois Tool Works Foundation Jeffrey and Kathleen Brown Heather MacGregor Patricia M. Brown Enshu (USA) Corporation Donna Iozzo-Kroll Robert and Ruth Brown Jessica Bruederle Lucy and Michael Jezowski Barbara Bychowski Angelica Felix Gornet Irving A. Johnson Catherine Micinski Armando Fernandez Fernando Calvarese Scott and Colleen Campbell Mark and Mary Monson Cal and Joan Cann Jack and Peggy Cashman Shirley and Tom Myers, Jr.
Chuck and Natalie Gatto Patricia Naughton Mee Phon Chin Uhrik Richard and Judy George Marri Kelly-Banks Alison and John Kessler Christine Newman-Davis e MGF of Illinois - Conquer, August 2015 - p 9 e Can You Help Us Meet Our Goal?
Patient Assistance Program
Launched in 2014, the MGF of Illinois Patient Our mission is to improve the lives of Assistance Program will help cover the cost of MG patients with consultations, medical bills and prescription drug costs up to newsletters, new patient packets, support groups, and online resources like our website and YouTube channel.
You may be eligible if you are an MG patient, Your contribution will make a difference! reside in Illinois or Indiana, and can show proof of medical hardship. Costs do not have to be 2015 Target: $50,000 MG-related. Contact us (800-888-6208 or [email protected] myastheniagravis.org) for the application. Amount raised to date: $34,957 *To the extent funds are available.
In Appreciation (continued)
Christine Newman-Davis Gabriela Nunez-Reagan Dr. Wayne Rubinstein Robert and Cheryl Thompson G.R. and Nicky Waldo John and Bernadine Walsh Alberto and Regina Ruocco Jack and Judy Trevillian Robert and Jean Wassenar Jill and Scott St John Victoria Vasconcellos Keith and Lissa Parr Ralph and Kathy Vennetti Windy City Z Club Don and Marilyn Wood Lillian and Harry Schwarz David and Betty Scott Ann Marie Zaccaro Sherry SherfyCarolyn Shroyer In Memory Donors
Stephanie Peterson In Memory of George Brazelton In Memory of Patrick J. Cafferkey Sherrie and Bill Murray Carl and Patricia Philips In Honor of Peggy Cashman Michael and Sally Pope In Memory of Patricia J. Fitzgerald In Memory of Paul Frederick Bob and Jeanne Pitra In Honor of James J. Gaba, Sr.
Maria Giovanna Quatraro In Memory of Gordon Gebhardt In Memory of Sue R. Golding Mr. and Mrs. Vincent Solano In Honor of Joyce Holste In Memory of Michael J. Jamen Ida Jamen and children In Honor of Paul Later, MD Carl Stahl Jr.
In Memory of Raymond Mostek In Memory of William R. Prather In Honor of Bob Rosecrans Toni and Sharon Keene In Memory of Lorraine Schohn In Honor of Ken Shelton Cecil and Monica Stuart In Honor of Joanna Sherrod's birthday Esther Eisenstein In Honor of Joan Wincentsen Dr. Susan Engel-Arieli In Memory of Adel Zavagnin and in Honor of Geri & Deb Volpe e MGF of Illinois - Conquer, August 2015 - p.10 e MGF of Illinois Support Group Meetings
Our support groups are: •A place to go for information about your particular problems.
•A group of special friends - good listeners who care about your concerns.
•A group of people like you who share a common problem or interest in acquiring information on a par-ticular issue or need.
•A place to receive assurance, comfort, friendship and social support.
Several people have contacted MGF of Illinois about starting a Quad Cities support group. If you are interested in this or in starting another group, contact our office at 1.800.888.6208. A new Chicago-Central MG Support Group began in February 2015. Rush University Medical Center is hosting the group and it is being led by a licensed clinical social worker. You're welcome whether or not you're a Rush patient.
2015 DATES
Chicago - Central
Rush University Medical Center Professional Building, Conference room 1119 (11th floor), 1725 W. Harrison St., Chicago IL. Parking garage is at SE corner of Harrison and Paulina.
Chicago - North /
Glenbrook Hospital, Conference rooms B&C, 2100 Pfingsten Road, Near No. Suburban
Glenview, IL. Use center entrance and adjacent parking.
Chicago - South
Metro South Hospital, private dining room in cafeteria, 12935 S. Gregory, Blue Island, IL. Use ER entrance parking garage, off Union St.
Chicago - West
Central DuPage Hospital, 25 N. Winfield Road, Winfield, IL. Meet in Conference Room 3 on first floor. Enter at NW entrance, Women & Children's Pavilion. Valet parking is available plus additional parking in Visitor Lot 3.
Thank you Toni Lance, for your years of leadership and compassionate support! St. Anthony Medical Center, St. Francis Room, 5666 E. State St., Rockford, IL. Use main entrance.
Parkway Christian Church, 2700 Lindbergh Blvd in Springfield, just east of the Parkway Point Shopping Mall. Use main entrance.
NW Indiana
10:00 am – Schererville Public Library, 1001 W. Lincoln Highway, Schererville, Indiana. Ask at the front desk for meeting room.
Board Members Needed
Would you or a family member consider serving a term on the MGF of Illinois board? The board makes decisions about MGF of IL programs, outreach efforts and fundraisers. The commitment involves 5-6 meetings in Elmhurst, Illinois. Call 1-800-888-6208 to learn more.
e MGF of Illinois - Conquer, August 2015 - p.12 e The Myasthenia Gravis Foundation of Illinois, Inc.
Non-Profit Organization 275 N. York Street, Suite 401 Elmhurst, IL 60126 U.S. POSTAGE PAID MG101: Learn the Basics - Oct. 25 Conquer via Email reduces our expenses. Moving Soon? New Email? Let Us Know!
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