Winter 2017

Working for a future when no one with Guillain-Barré by Krista Fredericks (Jarret’s Mother), syndrome (GBS,) chronic Philadelphia, PA inflammatory demyelinating polyneuropathy (CIDP,) Jarrett started walking funny a couple days and related syndromes such before Halloween 2016. He said that the back as MMN suffers alone and of his legs were really hurting. Like anything, that everyone has access to I thought it was probably just growing pains; the right diagnosis and the he was seven at the time. Then the night of right treatment, right away. Halloween, we knew something was wrong when he was not able to walk up the steps to go trick or treating. In This Issue On November 1, I took him to his doctor. Page We were told they would get a scan of the 1 Patient Story, Jarrett legs and some blood work. The scan showed Charity Navigator 2 nothing and after the blood work, Jarrett 3 From the Executive passed out. Anytime a child passes out from Director blood work, they send them to the ER. While 4 Peripheral Nerve Society waiting in the ER for some time, Jarrett Meeting Research started to really complain about his legs, Projects and that the pain was shooting up into his 6 Ask the Experts arms and neck. When the doctor came in to 8 Centers for Excellence examine him, she said all his blood work came 9 International back fine. At the time of the examination, Development Meeting Jarrett could not even get his arms above was the best way to find out what was wrong. 10 Meet Your Regional his head nor was he able to touch his nose During the night, they gave us the results Directors with his finger. At this point, the doctor told that confirmed that Jarrett had Guillain-Barré. 12 Walk & Roll us that we needed to get him to a children’s The following morning, Jarrett was started on 13 2017 Liaison Chapter hospital right away. IVIG treatment for seven days. Jarrett was a Meetings We ended up at DuPont Children’s Hospital trooper through it all despite some serious in Wilmington, Delaware, where he was headaches as a side effect of the treatment. given a two-hour MRI. At first, everything Jarrett amazed the doctors with his progress. seemed fine, however the doctor told us that Present day Jarrett is a happy eight-year- he thought that it could be Guillain-Barré old boy, with some lingering after effects. He Syndrome. We had never heard of GBS and does get tired out quickly, especially when the only sure-fire way to find out was through participating in his favorite sport swimming, a spinal tap. My heart dropped at the thought but he never gives up! of having my seven-year-old going under Jarrett attended the Philadelphia Walk & such a risky procedure, but we decided that it Roll on October 29, 2017, and did just fine! Charity Navigator

EXECUTIVE DIRECTOR Lisa Butler

FOUNDER Estelle Benson

OFFICERS Charity Navigator recently named the GBS|CIDP Foundation International James Crone number 2 on their list of 10 Charities worth watching. With performance metrics President evaluating accountability and transparency of performance, the Foundation Matthew La Rocco earned a perfect score of 100! In addition, this marks our fourth consecutive year Vice-President with a 4 Star Award rating which validates the Foundation with an exceptional Patricia H. Blomqwist-Markens qualitative rating indicating that we exceed industry standards and outperform Vice-President most charities with a similar cause. Susan Keast Treasurer “Many of America’s most effective charities are also household names. But Russell Walter some well-known charities are less effective than you’d think, while a number Secretary of lesser known charities are truly exceptional. These 10 charities all operate on less than $2 million a year, but they earn a four-star rating from Charity BOARD OF DIRECTORS Navigator.” — Charity Navigator David R. Cornblath, MD Elizabeth B. Emerson K. Robert Doehrman Kenneth C. Gorson, MD Gail Moore Dominick V. Spatafora Joel S. Steinberg, MD, PhD Shane Sumlin Marilyn Tedesco Jim Yadlon

GLOBAL MEDICAL ADVISORY BOARD Kenneth C. Gorson, MD, Chairman Bart C. Jacobs, MD, PhD, Vice-Chairman Jeffrey Allen, MD Vera Brill, MD Diana Castro, MD David R. Cornblath, MD Peter D. Donofrio, MD Jonathan S. Katz, MD Carol Lee Koski, MD Richard A. Lewis, MD Robert P. Lisak, MD Eduardo Nobile-Orazio, MD, PhD Gareth J. Parry, MD David S. Saperstein, MD Kazim A. Sheikh, MD Joel S. Steinberg, MD, PhD Pieter A. van Doorn, MD Professor Hugh J. Willlison, MMBS, PhD, FRCP Gil I. Wolfe, MD, FAAN

Nonprofit 501 (c)(3)

Disclaimer Information Questions presented in The Communicator are intended for general educational purposes only and should not be construed as advising on diagnosis or treatment of Guillain-Barré syndrome or any other medical condition. Privacy Policy In response to many queries: Intrusive practices are not used by GBS|CIDP Foundation International. The organization does NOT sell its mailing list nor does it make available telephone numbers! The liaisons are listed in the chapter directory with their permission. We are proud that none of our members has ever been solicited or sent materials other than those concerning GBS, CIDP, and related syndromes such as MMN. We respect your privacy.

2 The Communicator | Winter 2017 GBS|CIDP Foundation International From the Executive Director

Dear Friends, As always at year’s end, we tend to reflect on the year past. So much has happened this year that recapping would need its own newsletter! On the following pages, you will read of some of our accomplishments, events, research, activities, etc. None of these could have happened without all of you! Of course, our Board of Directors, Global Medical Advisory Board, Chapter Liaisons, Walk-n-Roll chairs, and Points of Contact are all identified and we are grateful for the amazing job they do! But it is the micro-volunteers who also deserve acknowledgement, those Year at-a-glance of you who are an unnamed part of our family, who are out there also carrying out our missions of support, education, research, and advocacy. For example: patients who request extra materials to give to their doctors; young people requesting bracelets for a “pop-up” school activity; off-time volunteers to exhibit at their local health fair. Thank you to those who contribute to our social media pages. We can go on and on. What a great organization! What a great family! What greater message can I send to you but the best of health, happiness, and peace for the New Year! Sincerely, Lisa Butler Executive Director

Looking for some interesting reading? You will find a list of the most popular books on Guillain-Barré syndrome, CIDP, and variants on our website “library,” including an exclusive book, It’s Only Rare, until it’s YOU. It’s only RARE, until it’s YOU, is a fascinating collection of real patient survivor stories guaranteed to lift you up in your journey as you discover how others survived their trauma and lived to tell about it.

It’s Only Rare until it’s YOU is only available for purchase through the Foundation. Call 610-667-0131 to order your copy today!

A Message From Marie Torrence, Our Data Coordinator Please inform us of any address, phone or email changes. We strive to keep our contact information accurate and up-to-date!

GBS|CIDP Foundation International Winter 2017 | The Communicator 3 Research

The following research projects relating to GBS|CIDP were presented at the 2017 Peripheral Nerve Society Meeting in Sitges, Spain.

INCBASE Filip Eftimov, MD, PhD Department of Neurology, Academic Medical Center, Amsterdam, Netherlands. Chronic Inflammatory Demyelinating Polyradiculoneuropathy (ClDP) is a remarkably heterogeneous disorder with various clinical presentations. Despite different sets of diagnostic criteria , not all patients with treatable ClDP are identified. Several challenges remain during treatment, such as which treatment should be started first, when are patients adequately treated and when can treatment be stopped. In other words, there is an unmet need to improve diagnostic criteria and find clinical or biological variables that can predict treatment response, disease activity and long-term outcome. To address these questions, it is required to conduct a long-term prospective study with a large group of ClDP patients collecting highly standardized data and biomaterials. In recent years, several national registries and biobanks have been developed. However, even in large countries, these registries will not be able to include sufficient patients to address the most important challenges described above. Recently a multidisciplinary group of 24 people from 13 countries attended the European Neuromuscular Center (ENMC) workshop. Eight currently ongoing international ClDP registries that included a total of over 1300 patients were compared to assess infrastructure and collected clinical data, diagnostic data and biomaterials. During this workshop a consensus was reached on several important issues to make comparison between these registries possible. A central database (INCbase) will be used to upload data from current registries and databases while these registries continue to exist. Next steps are to harmonize the current registries protocols and to set up INCbase. This global database is expected to be operational in 2018 and will collect data from thousands of ClDP patients to enable solving some of the important challenges in diagnosing and treatment of ClDP.

Towards an affordable treatment of GBS for patients from low-income countries Badrul Islam, MD, PhD Fellow icddr,b, Dhaka, Bangladesh, Erasmus MC, Rotterdam, The Netherlands Guillain-Barré syndrome (GBS) takes its toll on the resource poor developing countries where the incidence of GBS is several fold higher than that of Europe and North America. In Bangladesh, 15% of patients with GBS die and 20% remain unable to walk. The poor outcome of GBS in these countries is explained predominantly by the lack of treatment and medical support. Specific treatment for GBS with either intravenous immunoglobulin (IVIG) or plasma exchange (PE) in Bangladesh can be afforded by a small minority of patients and more than 90% of patients receives only supportive care. Our aim was to develop a safe and effective treatment for patients who cannot afford the expensive IVlg or PE. We developed a new technique that is based on the same principle as PE, removal of neurotoxic antibodies and other components from the blood, but is 25 times less expensive. In this Small Volume Plasma Exchange (SVPE) blood is obtained from patients and cleared from the plasma just by gravity. This procedure can be done by the bedside of the patient, without the use of electricity and complex machinery. We started with a pilot study to define the feasibility and safety of the procedure using a strict protocol in 20 patients with GBS in the National Institute of Neurosciences and Hospital in Dhaka, Bangladesh. This study showed that the procedure indeed is feasible and safe during a follow-up of 6 months. We are very thankful to the GBSICIDP Foundation International for funding part of this study. Based on this study we cannot conclude on the efficacy of the treatment that needs to be defined in a new study in a larger number of patients. To conduct this efficacy study, further funding is required. If the efficacy is demonstrated, SVPE may become available to treat GBS in patients from low-income countries that are currently untreated. About more than half of all patients with GBS in the world belong to this category.

4 The Communicator | Winter 2017 GBS|CIDP Foundation International Research IMAGiNe Marielle Pruooers Universitv Medical Center Maastrict, The Netherlands IgM paraprotein associated polyneuropathy is a slowly progressive disease with numbness or tingling of arms and legs and severe imbalance. Occasionally, tremors and weakness are present. These symptoms are disabling, but difficult to measure. In addition, the disease is relatively rare, not very well-known, and there is no cure available. The IMAGiNe study aims to gather more knowledge about the disease by creating an international database of a large group of patients. From these patients we will learn more about the history of the disease, neurological and hematological disease characteristics, and the response to current or past treatments. The IMAGiNe study will also evaluate current outcome measures and develop new outcome measures, hereby focussing on patients’ needs. These outcome measures will represent the impairments, disabilities, quality of life and treatment expectations. The study has started in the Netherlands in 2016, and currently 90 patients are included. In 2017 the study will also be performed in the United Kingdom, Spain, Serbia, Italy, France, Switzerland, and the United States of America, aiming to include at least 400 patients worldwide. The knowledge gained from the IMAGiNe study will serve as a starting point for new therapeutic trials in the near future.

A new treatment with compliment inhibition improves motor function in Guillain-Barré Syndrome: Japanese eculizumab trial for Guillain-Barré Syndrome (JETGBS) Satoshi Kuwabara Department of Neurology, Chiba University Hospital, Chiba, Japan Recent basic studies on the pathophysiology of Guillain-Barré syndrome (GBS) have shown that complement activation has a major role on peripheral nerve damage in GBS. Eculizumab (Alexion Pharmaceuticals Inc) is a humanized monoclonal antibody against complement C5, and is approved to treat complement-mediated blood diseases. At the Peripheral Nerve Society Congress (8-12 July 2017, Sitges, Spain), Japanese GBS study group presented results of a randomized placebo- controlled phase 2 trial with eculizumab in patients with severe GBS (unable to walk). At 24 weeks, marked improvement in motor function was observed in patients treated with eculizumab; 74% of patients in the eculizumab group (n=23) regained ability to run , compared with 15% in the placebo group (N=11). To read more about this study, please visit our website.

A dose response trial of IV immunoglobulin in Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)/DRIP study Professor K. Kuitwaard Erasmus MC, University Medical Center, Rotterdam, The Netherlands In clinical practice ClDP patients are treated with several dosages of intravenous immunoglobulin (IVlg) as well as with different intervals. It has never been investigated what the optimum dosage and frequency of IVlg in ClDP is. The effective component of IVlg is IgG. More frequent dosing will lead to more stable IgG levels in the blood as well as higher trough levels (the level directly before the next dose) which may lead to an improvement in muscle strength. Furthermore, more frequent dosing will lead to lower peak levels (the highest level in the blood) which may lead to less side effects. It has never been investigated whether high frequency low dosage IVlg treatment is more effective than low frequency high dosage. In the DRIP study we investigate if: 1. A more frequent infusion at a lower dosage is more effective in ClDP. 2. A more frequent infusion at a lower dosage leads to less side-effects. 3. A more frequent infusion at a lower dosage leads to more stable blood levels. It has been shown that a lot of ClDP patients are still receiving immunoglobulins even though they do not need treatment any longer. Therefore we will check before the start of the study whether patients still need IVlg treatment. To read more about this study, please visit our website.

GBS|CIDP Foundation International Winter 2017 | The Communicator 5 Ask the Experts

over weeks till there is benefit or intolerance. There is Reprinted are some of the just not enough information available to offer guidance Ask the questions from patients that on trying naltrexone. It seems unlikely that a trial of low we forwarded to members of dose naltrexone would be harmful if its use is guided by Experts our Global Medical Advisory the drug’s literature. All of these suggestions likely should Board. We have included the be discussed with your daughter’s neurologist and/or responses that we thought family physician who are familiar with the particulars of her medical status and thus in an optimal situation to would be of interest to you! offer guidance. ______QUESTION: The question is asked about life expectancy in CIDP. QUESTION: I’m a physiotherapist working in rural Australia and have been asked to provide some assistance REPLY: In general, life expectancy for CIDP patients is good, comparable to the general population who don’t to a young boy suffering from this condition. I haven’t have this disorder. CIDP can follow various courses, reviewed with him yet. But understand it took a few sometimes with recurrences or relapses over years, weeks to diagnosis and he has some postural issues, sometimes with a chronic progressive course. Complete along with fatigue and lots of global weakness. If you remissions can occur, where the disorder seems to burn have any protocols for physio rehab they would be out. Rarely, respiratory failure may occur, which is relatively greatly appreciated. much more common in the acute acquired demyelinating REPLY: neuropathy, Guillain-Barré syndrome (GBS), placing the 1. Ideally getting a PT and OT evaluation to work on patient at risk for cardiopulmonary collapse and death. strength,safety and activities of daily living. Other potential causes of death in GBS, such as cardiac 2. Patients with GBS tend to have increased fatigue, for arrhythmias, are also quite rare in CIDP. this reason the sessions should focus mainly on balance, ______stretching, endurance and functional adaptations. We don’t want them to get exhausted. QUESTION: My daughter is diagnosed with CIDP and for 4 years is receiving monthly transfusions of IVIg which 3. Equipment and brace evaluation is important. Patients has limited the progression of the disease. She still suffers may need AFO’s during initial recovery due to distal from pain in her hands and fatigue especially the week weakness and sometimes foot drop. We recommend prior to her IVIg treatment. I have been reading about the the use of manual wheelchair for long distances if use of Low Dose Naltrexone for patients with autoimmune the patient is too fatigued, with the goal of energy disease and am interested if there is any evidence of use/ conservation. success with CIDP. Any information would be appreciated. 3. Ideally the session should be performed in a rehab/PT I am a donor to your organization. gym to take advantage of the equipment. 4. Be aware if there is any sensory loss, to educate the There are few if any reports on the use of REPLY: patient and he family about daily foot inspection and naltrexone with inflammatory neuropathies such as making sure the temperature of the water is appropriate. ClDP and Guillain-Barré syndrome. Studies have been performed using this drug in hereditary neuropathies 5. Educate family about transfers and position in bed. such as Charcot-Marie-Tooth disease and metabolic 6. Educate the family about stretching and exercises they neuropathies such as in diabetes and alcohol use as can do safely at home. well as multiple sclerosis. But it Iikely would not be easy ______to extrapolate from those experiences to predicting QUESTION: Part of my job as a Home Infusion pharmacist naltrexone’s potential benefit in ClDP. The patient is is initial assessments on potential IVIg patients, so I speak described as having pain in her hands and fatigue during with many CIDP and GBS patients. I was wondering if the week before her monthly IVIg treatment. Rather you have any information on diet and ClDP-specifically than entertaining a trial of naltrexone, it might be more ketogenic diets. fruitful to consider moving the IVIg treatments up, to every 3 weeks, to see if that approach will help relieve REPLY: That has not been formally studied for ClDP that symptoms. For pain, such agents as pregabalin (Lyrica) we know of. Some recommend an anti-inflammatory and gabapentin (Neurontin) have sometimes been diet, which is avoiding foods high in saturated fats. Eat beneficial and are likely worth a try. The key is to start more fruits and vegetables. Foods thought to reduce these drugs at a low dose and slowly build up the dose inflammation include olive oil, dark leafy vegetables like 6 The Communicator | Winter 2017 GBS|CIDP Foundation International Ask the Experts kale, spinach and broccoli, oily fish like salmon, tuna, given. A relatively young and healthy person can get 1 mackerel, and sardines. Almonds, ginger root, low-fat gram per kg of IVIg in a single day. In an older patient we yogurt, tomatoes, beets, sweet potatoes. This again has may divide that dose over 2 or 3 days (some physicians not really been studied but is a reasonable diet anyway. are cautious and give IVIg over several days in everyone). ______Some CIDP specialists give less than 1 gram per kg per month. Surprisingly, there is not much research to QUESTION: I have a damaged peroneus and I can’t push determine the optimal IVIg dose. However, if someone my feet up, on the hands I do not have fine motor skills. is not doing well it makes sense to give a higher dose. They told me that this damage is from a vaccine named The bottom line is that it would be reasonable for you to POLIO. That happened to me when I was 3 years old, now receive at least 1 gram per kg of IVIg every 3 weeks. Some I’m 20. I’m interested if there’s a solution for this and can physicians will give as much as 2 grams per kg of IVIg you help me? Can I renew my nerves? every 3 weeks. That would generally be the maximum. REPLY: Damage to peroneal nerves and loss of fine motor Hope this answers your question satisfactorily. (to get skills can be due to several disorders. It is unlikely that your weight in kg divide your weight in pounds by 2.2). these current problems reflect the effects of a vaccine ______received so many years ago. Rather, it would likely be prudent to consider other causes, such as hereditary QUESTION: Is there a standard protocol that they follow (e.g., Charcot-Marie-Tooth disease) or acquired peripheral to detect any cardio respiratory regression? neuropathies. More information than is provided in the REPLY: For GBS in the acute setting spirometry should query would likely be helpful to hone in on the underlying be measured frequently, between twice daily and 4 times diagnosis. It will likely be best to obtain a hands-on daily depending on the clinical concern for respiratory evaluation by a neurologist who specializes in neuro- compromise. When expiratory FVC decreases below muscular disorders and/or peripheral neuropathies. Your 15cc/kg/body weight or NIF declines to less than 20 cm local medical school’s university teaching faculty likely H20, urgent intubation and mechanical ventilation should has such specialists in their neurology department. The be strongly considered. If these respiratory parameters neurologists of the Center of Excellence of the GBS|CIDP Foundation are also suggested as a reliable resource to are precipitously declining but have not reached these obtain an evaluation. Best of luck. A timely evaluation is thresholds intubation should also be performed on a encouraged since earlier treatment of some disorders semi-elective basis to avoid urgent intubation at untimely may lead to less risk of more nerve damage. hours or uncontrolled settings. ______

QUESTION: My question for medical expert is: I only QUESTION: How hard should one push the patient receive 55 grams IVIg (has been every 3 weeks since (especially patients who are say, gym instructors and end of April, will be every 2 weeks after this plasma already attuned to muscle fatigue and/or a certain exchange). The other man I know about (different amount of pain-tolerance)...are there any guidelines in doctor, my age-74, who weighs 1 1/2 times what I do) has this respect that cater for specific patients like these? been getting treatment (after loading), 5 days straight That is, if physiotherapy pushes the selected few GBS x 3 times, now 2 days x 2 times, way more grams, is patients, who ultimately want to be pushed, in a gym style improving happily, was first seen by hematologist to workout rotating limbs, etc. are we causing deleterious target his IVIg. I have no health issues in my life (till the effects? back surgery last November which threw me into CIDP) REPLY: There are no formal guidelines to counsel except right breast cancer mastectomy 11 years ago, and patients on activity following GBS but we know that I do take RX for high blood pressure and for hypothyroid. ability appropriate escalation of exercise is good. It has How many more grams may I take? been shown that post-GBS patients have the capacity REPLY: Different CIDP specialists have different to improve fitness and that exercise improves fatigue (a approaches to how they dose IVIg. Having said that, the common residual in GBS). Caution is advised with isometric most common strategy is to give 2 grams for every kg exercises in muscles that are weak, as this may induce of body weight as an initial dose and then give 1 gram of deleterious damage to muscles that are already impaired. IVIg per kg every 3 or 4 weeks. The number of days of I discourage patients from exercising weak muscles until treatment is not the important factor; the total amount failure. I encourage regular exercise and activity, even in of IVIg given is the important factor. A person’s age and weak muscles, that is appropriate to the patients ability other medical issues determine how quickly IVIg can be level, safe, focuses on flexibility, and is aerobic. GBS|CIDP Foundation International Winter 2017 | The Communicator 7 GBS|CIDP Centers of Excellence 2017 GBS|CIDP Centers of Excellence

Our Centers of Excellence are growing! Check our website for contact information for those listed here.

1. Amsterdam, The Netherlands - Academic Medical 21. Los Angeles, California - University of California Center (AMC), University of Amsterdam Medical Center 2. Camperdown, Sydney, Australia - University of 22. New Orleans, Louisiana - Louisiana State Sydney University 3. Baltimore, Maryland - The Johns Hopkins 23. Rozzano, Italy - Milan University, Humanitas University School of Medicine and The Johns Clinical and Research Center Hopkins Hospital 24. Minneapolis, Minnesota - University of Minnesota 4. Barcelona, Spain - Hospital Santa Creu I Sant Pau Health Neurology Clinic 5. Belgrade, Serbia - University of Belgrade Clinical 25. Nashville, Tennessee - Vanderbilt University Center of Serbia Medical Center 6. Birmington, United Kingdom - University 26. Newark, New Jersey - Rutgers, the State Hospitals of Birmingham University of New Jersey 7. Buenos Aires, Argentina - Hospital Britanico 27. New York, New York - Columbia University Medical Center 8. Buffalo, New York -University at Buffalo School of Medicine and Biomedical Sciences, The State 28. Orange, California - University of California-Irvine University of New York 29. Osaka, Japan -Kindai University Faculty of 9. Burlington, Vermont - University of Vermont Medicine Medical Center 30. Paris, France (Cretei1 is a suburb of Paris) - 10. Charlottesville, Virginia - University of Virginia Universitaire Henri Mondor, Universite Paris Est Health System 31. Philadelphia, Pennsylvania - Perleman School of 11. Columbus, Ohio - Ohio State University- Wexner Medicine at the University of Pennsylvania Medical Center 32. Phoenix, Arizona - Barrow Neurological Institute 12. Dallas, Texas - UT Southwestern Medical Center 33. Phoenix, Arizona - Phoenix Neurological 13. Denmark - Aarhus University Hospital Associates 14. Detroit, Michigan - Wayne State Univeristy Group/ 34. Rochester, MN - Mayo Clinic Detroit Medical Center 35. Rotterdam, The Netherlands - Erasmus MC 15. Duesseldorf, Germany - Heinrich-Heine University University Medical Centre Department of Neurology 36. San Francisco, California - California Pacific 16. Houston, Texas - The University of Texas Health Medical Center Science Center at Houston (UTHealth) 37. Salt Lake City, Utah - University of Utah, Marsani 17. Kansas City, Kansas - The University of Kansas College of Medicine Medical Center 38. Tampa, Florida - University of South Florida 18. London, England - King’s College Hospital 39. Toronto, Ontario, Canada - University Health 19. London, England - MRC Centre for Neuromuscular Network, Hospital for Sick Children, University of Disease, National Hospital for Neurology Toronto Neurosurgery 40. Warsaw, Poland - Medical University of Warsaw 20. Los Angeles, California - Cedars-Sinai Medical 41. Wellesley, Massachusetts - Saint Elizabeth’s Center Medical Center

8 The Communicator | Winter 2017 GBS|CIDP Foundation International International Development Meeting – Amsterdam November 2017

hanks to our industry partners, we traveled to Amsterdam to host a meeting with our international Tvolunteers from Europe and surrounding countries for an International Development Meeting. We were joined by twenty liaisons for an informative day to provide updates on Research, Foundation Topics, and ways for them to host chapter meetings in their countries. A special thank you to Global Medical Advisory Board members Dr. Bart Jacobs, Dr. Pieter van Doorn & Benson Fellow recipient Dr. Ruth Huizinga for presenting on topics such as research updates, an update on the Benson Fellowship, and on management of residuals relating to our conditions. We also thank Bruno Santoni , Executive Director, Plasma Protein Therapeutics Association of Europe for speaking with our members about PPTA and information regarding Plasma Protein Therapies & safety. Our Foundation is so very fortunate to have a team of dedicated volunteers from all over the world. It was an honor to spend the weekend learning from one another & identifying ways we at the Foundation can better support our team, who will then spread their knowledge with their members back home! We so very enjoyed the time we were able to spend with our extended family!

GBS|CIDP Foundation International Winter 2017 | The Communicator 9 Meet Your Regional Directors!

There are eleven directors who volunteer to assist our chapter liaisons in planning meetings, arranging hospital visits, and help to expand the networking we have created for our patients. This group met at our new office on October 28th. Their enthusiasm and dedication to “the job” was inspiring! Here they are! The geographical area they are responsible for, who they are and why they volunteer. Let’s thank them for the outstanding job they do!

Rick Forney Merrily Macurak Mid-Atlantic Region Southeast Region I was diagnosed in December I was diagnosed with GBS in 2007 of 2008 and started with the and became a liaison in 2014. Foundation in 2011. I volunteer I started volunteering so no to help others, to be able to patient or family would feel offer hope and encouragement alone on their journey like I did to patients and their caregivers, before I found the Foundation. and to share the information that I hope by sharing my knowledge the Foundation has to offer those and experience that I bring them who find themselves in the reality of a mysterious and some comfort knowing they will get better. frightening diagnosis.

Patricia H. Blomkwist-Markens Yvonne Bishop International Southwest Region I was diagnosed with GBS in I was diagnosed with GBS on September 1990. While in the December 31, 1994. I started with ICU on a ventilator, I vowed to the Foundation in 2010 as a liaison start a support group. I attended and became a regional director in the GBS Symposium in the fall 2013. I love visiting patients in the of 1991, was appointed liaison for hospital and at support group The Netherlands, and eventually meetings and reassuring them became Regional Director. that it is going to be okay. They I remember what it felt like to may have to learn how to do things a different way but it receive high quality information about my disorder and a is going to be okay. visit by a recovered patient! That made all the difference in the world! I want that for patients all over the globe!

Julie Bell Texas Region Margee McKenna I was diagnosed with CIDP in North Central Region December 1990. I have been I had a mild case of Miller-Fisher a liaison since 2011. Being a Syndrome in 2002. It became full- Foundation volunteer means blown in 2007. I became involved that I have an opportunity to with the Foundation in 2009 reach out to others, provide because I thought I could help, comfort for families, and help that I had something to offer. As it educate everyone. turns out, I have received so much more. It is so rewarding to talk to a patient for 30 minutes and end a phone call or visit with them saying, “Thanks. You helped me feel better.”

10 The Communicator | Winter 2017 GBS|CIDP Foundation International Jim Yadlon Lee Ann Gooseman Northeast Region West Region I was diagnosed with GBS on On February 15, 2009, I was November 17, 1973. I joined the diagnosed with Miller-Fisher GBS|CIDP Foundation in 2011. Syndrome. When I reached out I became a liaison in order to to the Foundation and talked give back to the new patients with both Kassandra and Bob, and their families who are going I knew right then I was in the through GBS or CIDP now. My right place and wanted to be a wife Rachel and I remember the liaison. The way they talked with loneliness and the anxiety of lying in that bed, totally me and answered all of my questions with compassion and paralyzed. When I am able to help a GBS or a CIDP patient caring, I had to be part of this. Mike and I were so scared or caregiver get through this, it is a very good feeling. when I got diagnosed and there wasn’t anyone around who heard of it let alone had experienced this. I wanted to be able to help others as I was with Kassandra and Bob. They both saw something in me to offer me a liaison Sheila Blaine position. I enjoy meeting new people. It makes me feel Northeast Region wonderful to know that when I can walk into a room and I was officially diagnosed with they see that I am okay, the hope it brings to their eyes CIDP on October 30, 1992, at the along with their family’s eyes is a feeling you can’t describe. age of 27. I joined the Foundation I may not have all of the knowledge but because I am as a member after Dr. Mark Brown compassionate and caring with everyone it re-assures them confirmed my diagnosis the that everything will be okay. following week and told me about the Foundations existence. As a bit of trivia for you guys, my first symposium was the one in Baltimore’s Inner Harbor in the Bob Doerhman fall of 1993, and that is when I met Estelle. I became a liaison Alabama, Arkansas, in 2013 ad later assistant regional director (aka Jim’s “wing Florida, Louisiana, and woman” LOL) in the northeast at the end of 2015. There is Mississippi no greater purpose in my life, and there is nothing more I joined the GBS|CIDP Foundation important to me than being a part of this mission of bringing International organization at large hope, support, and information to fellow patients and their in 2001 after I was diagnosed with loved ones. No one should ever have to feel alone in this. Guillain-Barré Syndrome (GBS). I became a liaison for the state of Alabama in June 2003 and a Regional Director in May of 2005. I eventually became Jon Toomey Co-Coordinator of Liaison Activities for the Foundation Midwest/Mid-Central Region along with my good friend Kassandra Ulrich from Ohio. I was diagnosed with GBS in It is gratifying to be able to provide patients and families 1997. I was in the medical hospital with the information they want and need to reduce the for four weeks, rehabilitation stress and worry in their lives. I sometimes have contact hospital for five weeks, and off with patients and families for years following their initial work for four months. I started illness as they keep me up to date on their recovery process. volunteering for the Foundation One patient who was told that he would never be able to in 2005. When afflicted, I was become a fireman, would not let GBS hinder him, and went told I would get everything back. on to fulfill his goal. Stories such as this warm my heart. Lying in bed, paralyzed, on a ventilator, unable to do anything for myself, and later confined to a wheelchair, I was very skeptical. I volunteer to give patients and Please join us in thanking our dedicated family members a sense of hope, because I did indeed get Regional Directors who serve with everything back. I am living (and walking) proof that there is true hope to conquer these illnesses. I know first-hand such deep compassion! how scary GBS is for the patient and family. GBS|CIDP Foundation International Winter 2017 | The Communicator 11 Thank you to everyone who made the 2017 walk season truly amazing! We are gearing up for a great 2018. It’s not too late to get your town on the calendar next year. Contact Jessica at [email protected] to set one up today!

JUNE 11 - BASKING RIDGE, NJ SEPTEMBER 16 - STATEN ISLAND, NY OCTOBER 14 - WASHINGTON, DC Sue Salzmann Crystal Sada Tonya Charleston AUGUST 6 - SEATTLE, WA SEPTEMBER 17 - PORTLAND, OREGON OCTOBER 22 - KNOXVILLE, TN LeeAnn Gooseman Dani Sticka & Matt LaRocca Chris Davis SEPTEMBER 9 - MYRTLE BEACH, NC SEPTEMBER 23 - BOSTON, MA OCTOBER 29 - PHILADELPHIA, PA Merrilyn Macurak & Rick Forney Brenda Valentzas GBS|CIDP Foundation SEPTEMBER 10 - SAN FRANCISCO, CA OCTOBER 14 - INDIANAPOLIS, IN NOVEMBER 18 - FORT MYERS, FL Russ Walter Susan Martin-Gibbons Kristy Vaughn & Jon Toumey SEPTEMBER 16 - PITTSBURGH, PA DECEMBER 2 - TAMPA, FL Kristen Weaver Donna Holden

110 TEAMS ~ 1200+ WALKERS ~ $300,000+ RAISED

12 The Communicator | Winter 2017 GBS|CIDP Foundation International 2017 Liaison Chapter Meetings L=Liaison S=Speaker

2/18/2017 3/18/2017 4/22/2017 5/13/2017 KAHULUI, HI ALEXANDRIA, VA ST. PAUL, MN SAN FRANCISCO, CA L Sharon Klaschka, L Tonya Charleston L Megan Kaump L Russ Walter S Therapist from Hale S Dr. C. Phillip Bush S Dr. Jeffrey Allen S Dave Mayer Makua Physical Global Medical Disability Employment Therapy Deptartment 3/18/2017 Advisory Board ROANOKE, VA 5/20/2017 2/22/2017 L Rick Forney 5/6/17 HACKETTSTOWN, NJ DALLAS, TX S Dr. Ahmet Burakgazi DEERFIELD, IL L Sheila Blaine L Amy Rollason L Jennifer Flary S Virginia Krauss, RN, MSN S Richard J. Barohn, MD 3/18/2017 S Melba Debulgado University of Kansas WILSONVILLE, OR Infusion Nurse 5/21/17 L Dick Beukema ASHEVILLE, NC 3/1/17 S Larry Fein, RN 5/6/2017 L Judi Jetson DUBUQUE, IA CONWAY, SC S Gin Oman L Bridget Hamilton 3/25/2017 L Merrilyn Macurak Licensed Practicing S Bradley Schumacher WOODLAWN, TX S June Wood Counselor L Amy Rollason Aquatic Coordinator for 3/5/2017 S Sharon Nations, MD City of Conway SC 5/30/2017 GREENWICH, CT NEWBURGH, NY L Sibylle DeRosa 3/28/2017 5/6/2017 L Bob Burton Activity: Panel Discussion NEWBURGH, NY ROCHESTER, NY S David Tancredi L Bob Burton L Gail Buckingham 3/14/2017 Activity: Panel Discussion S Priya Dhawan, MD 6/3/2017 CARLSBAD, CA ALBUQUERQUE, NM L Marilyn Tedesco 4/1/2017 5/13/17 L Jack Sena S Dr. Gregory Sahagian HOUSTON, TX EAST WINDSOR, NJ S Dr. Carol Koski, MAB S Dr. Tara Quesnell L Patsy Organ L Jim Yadlon S Anna Lisa de Joya S Dr. Shan Che 6/3/2017 3/16/2017 Robert Wood Johnson ALEXANDRIA, VA CARLSBAD, CA Medical Center L Tonya Charleston L Marilyn Tedesco S Perry Richardson, MD S Dr. Gregory Sahagian George Washington S Dr. Tara Quesnell University

Michael Ring - Brooklyn, New York Dennis Bosch - Los Angeles, California GBS|CIDP Foundation International Winter 2017 | The Communicator 13 2017 Liaison Chapter Meetings L=Liaison S=Speaker

6/3/2017 6/24/2017 8/26/2017 9/24/17 INDIANAPOLIS, IN COLUMBUS, OH PHOENIX, AZ BEAR, DE L Jon Toumey L Bill Ainsley L Bruce Throckmorton L Joyce Gillespie S John Kincaid, MD S Melinda Mcguire S David Saperstein, MD S Grace Ademski, PT, Indiana University S Aimee Stitt Global Medical DPT, GCS, NCS LSW, MSW & MS Advisory Board Physical Therapy 6/3/2017 Neurologic Specialist LINCOLN, NE 7/8/2017 8/26/2017 L Pat Schardt HUBBARD, OH RALEIGH, NC 9/24/2017 S Regina Schweitzer L Tim McKenna L Dee Gause GREENWICH, CT Certified Occupational S Karly Wozniak S Harriett Hansell, M.D. L Sibylle DeRosa Therapy Assistant Occupational Therapist S Dr. Halina Snowball 8/29/2017 6/4/2017 7/25/2017 NEWBURGH, NY 9/26/2017 MCKEES, PA NEWBURGH, NY L Bob Burton KNOXVILLE, TN L Michael Egenlauf L Bob Burton Activity: Open Discussion L Chris Davis S Sasa Zivkovic, MD S Matt Castelluccio S Al Kaye, Recreation Neurologist Inspirational Speaker, 9/23/2017 Therapist Featured on “20/20” EGG HARBOR 6/10/2017 TOWNSHIP, NJ 9/28/2017 STATEN ISLAND, NY 8/12/17 L Gina Sharpley WINDSOR, VT L Ray Lopez ALEXANDRIA, VA S Dr. Steven Scherer, L Luey Clough S Annice Mason, MD S Dr. Edward Yu L Tonya Charleston University of Neurologist, Staten S Philip Goglas II Pennsylvania 10/7/2017 Island University Hospital SALEM, VA 8/12/2017 9/23/2017 L Rick Forney 6/17/2017 NORTH RICHLAND OAK RIDGE, NJ S James Romano, SACRAMENTO, CA HILLS, TX L Kristina Orlandi Director of Government L David Mayer L Valerie Keller S Deborah Kingsley, RN, Relations, Patient S Jeanine Perry S Shaida Khan, DO CPUI Services Inc. Licensed Physical Neuromuscular Therapist Medicine, UT Southwestern

Kristen Spaunhorst - Eureka, Missouri Gary Ruppel - Franklin, Tennessee

14 The Communicator | Winter 2017 GBS|CIDP Foundation International 10/14/2017 10/22/2017 11/12/2017 11/18/2017 EUREKA, MO WHITE PLAINS, NY BATON ROUGE, LA EAST WINDSOR, NJ L Kristen Spaunhorst L Jon Schandler L Glenn Miller L Jim Yadlon S Lucas Dieckahus, LPC S Scott Grayson, Physical S John England, MD, FAAN S Dr. Shan Chen Therapist LSUHSC School of Robert Wood Johnson 10/14/2017 Medicine Medical Center SANDY SPRINGS, GA 10/28/2017 S Dr. Ranjan Rao L Bill Robbins PHILADELPHIA, PA 11/13/2017 S John Beidler S Dr. Al Cook, Foundation Office ORION TOWNSHIP, MI Physical Therapist Neurologist L Bryn Mawr Rehab L Wes Henrikson Specialists S Robert Lisak, MD 12/9/2017 10/15/2017 Wayne State University ALEXANDRIA, VA NEW YORK, NY 10/28/2017 Medical School, L Tonya Charleston L Dana Wyn Sherman SARASOTA, FL Member, Global S Perry Richardson, MD S Dr. Howard Sandler, L Robert Bard Medical Advisory Board George Washington Neurologist S Virginia Kraus, RN, MSN Medical Faculty 10/21/2017 11/16/2017 Associates FRANKLIN, TN 11/2/2017 GREER, SC L Gary Ruppel BROWNSVILLE, TX L Pamela Wrobel 12/9/2017 S Dr. Charles Clarke L Nancy Skidmore S Erin Hudgins HACKETTSTOWN, NJ Vanderbilt University S Leo Garza L Sheila Blaine School of Medicine 11/18/2017 S Dr. R. Wolf Shipon, 11/4/2017 ST PAUL, MN PhD Licensed 10/21/2017 MINNEOLA, FL L Megan Kaump Psychologist INDEPENDENCE, MO L Janice Dunkerton S Dr. George Manousakis L Yvonne Bishop S Dr. Ken Ecker 12/9/2017 S Mamantha Pasnoor, MD TULSA, OK 11/12/2017 L Bruce Simpson 10/21/2017 BROOKLYN, NY S Dr. Eric Edgar TORRANCE, CA L Michael Ring Neurologist L Dennis Bosch S Dr. Myrna Cardiel, NYU S Tahseen Mozaffar, MD Langone Health Univ. of California, Irvine

Please enjoy these chapter meeting pictures. Thank you to the liaisons who organized each one in spite of some unforeseen happenings and last-minute jitters!

Kris Orlandi - Oakridge, New Jersey Annette and Jerry Jones (meeting hosted by Dee Gause - Raleigh, North Carolina Valerie Keller - Fort Worth, Texas) GBS|CIDP Foundation International Winter 2017 | The Communicator 15 375 E. Elm Street, Suite 101 Conshohocken, PA 19428

SAVE THE DATE! November 1-3, 2018 Registration to open in January! Cheers to 30 years! Our 15th Biennial Symposium will be held in San Diego, CA!

Refer to the enclosed chapter directory to contact the chapter nearest you. In addition, our “Subgroups” are listed below.

Diagnosed with MMN? Teenagers with GBS and CIDP Be sure to inform us if you have Contact: Dominick Spatafora For teens ages 12 to 18 with GBS been diagnosed with one of [email protected] or CIDP to connect with one another, the following. This will add share stories, and support each your name to condition-specific Miller Fisher Variant Group other. This group is also open to communications. Please call us for contact with others. teenage children of patients. AMAN Contact us to find out how to join! AMSAN Children with GBS Anti-MAG Lisa Butler, 610-667-0131 International Office: GBS|CIDP Foundation International 610-667-0131 Campylobacter Email: [email protected] GBS X2 Pregnant Women with GBS Son, Stuart, had GBS at 5 1/2 years old Miller Fisher Robin Busch, 203-972-2744 MMN Children with CIDP 264 Oenoke Ridge For children diagnosed with CIDP New Canaan, CT 06840 contact Holly Cannon whose Robin has offered to share her daughter, Hailey, has CIDP. experience with GBS which came [email protected] about during her pregnancy.

Looking for a 20-Something Contact? Advocacy Contact: Kyle Van Mouwerik If you are interested in advocacy [email protected] activities on a federal, state, or local level, contact us to sign up!