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.