GBS|CIDP FOUNDATION INTERNATIONAL · A GBS chapter meeting is a very interesting experience. After...

SUPPORT EDUCATION RESEARCH ADVOCACY SUPPORT EDUCATION RESEARCH ADVOCACY

GBS|CIDP FOUNDATION INTERNATIONAL

15th Biennial Symposium Celebrating 30 Years

NOVEMBER 1-3, 2018 San Diego, California

2018 Symposium Program is Sponsored by Shire

SYMPOSIUMSAN DIEGO

CALIFORNIA

2018

Visit CSL Behring at Booth #2 to learn more!

• 1 Live Self-infusion Demo• 2 Experts in Subcutaneous Ig• 1 Live Q&A About Self-administered Ig

Subcutaneous Ig:A Simple Recipe

Join Us for Lunch FridayLearn how you can self-infuse your Ig with subcutaneous treatment

Self-infused subcutaneous Ig is stirring things up across the CIDP community,but many still don’t know how it’s done or why it matters. Come see a subcutaneous self-infusion demo firsthand and learn about the convenience and flexibility that self-administration can provide.

Subcutaneous Ig: A Simple Recipe Friday, November 2, 201812 PM–12:30 PM PSTOutside pavilion area atthe Hilton San Diego Resort & Spa

Biotherapies for Life® is a registered trademark of CSL Behring LLC.©2018 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA

www.CSLBehring.com HIZ-0649-AUG18

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15th Biennial Symposium 3

WELCOME TO THE 15th International SymposiumSo much to celebrate! 30 years of gathering together for the biggest GBS|CIDP patient support meeting in the world! While you’re here for our 15th International Symposium, our goal is to provide you with a unique and exciting opportunity to interact with others who are dealing with the same, or similar, issues that arise from having GBS or CIDP and variants. This year’s Symposium offers more than 30 workshops sharing practical information and teaching valuable life skills. Don’t be shy! While you’re at the Symposium, please look forward to meeting and conversing with our Medical Advisory Board and Guest Presenters, made up of some of the best and brightest physicians and practitioners from around the world. Plus our industry partners are here to educate and answer any questions about the products and services they represent. Looking for ways to manage stress, or take a little respite? Don’t miss our new feature — The Symposium Zen Den with concurring sessions on both Friday and Saturday!

Please stop me to say hello — My wish is to meet and speak with each and every one of you! This is a full two days, I charge you to listen, learn, connect, share, engage and have some fun, in what has become my conference mantra,

“I hope you meet people just like you who have similar experiences. I hope you walk away inspired with new knowledge and empowered to take action in your own situation! For the next 48 hours, this is your family and remember that when you leave here, you are a volunteer, a patient, caregiver, supporter. You will always belong!”

Gratefully,

Lisa

THANK YOU TO OUR 2018 SYMPOSIUM SPONSORS!

PLATINUM

CSL BehringGrifols

SILVER

KedrionShire

BRONZE

Accredo/Express ScriptsBioTek Remedies DiplomatKroger Specialty PharmaNuFactorPlatformQ HealthPPTARMS Medical ProductsThe Schardt Family Soleo HealthTerumo BCT

FROM OUR EXECUTIVE DIRECTOR, LISA BULTER

SYMPOSIUMSAN DIEGO

CALIFORNIA

2018

EXECUTIVE DIRECTOR LETTER & SPONSORS

15th Biennial Symposium 5 4 GSB|CIDP Foundation International

In honor and memory of Bob Benson, we share his 1988 keynote address at the very first symposium, Philadelphia, PAVERY FIRST KEYNOTE SPEECH BY BOB BENSON, PHILADELPHIA 1988.

“There is a saying that it is a long way from there to here, and in the case of the Guillain-Barré Syndrome Support Group it has been a very Interesting trip. What started out as a day of visiting and giving moral support to GBS patients in hospitals has evolved into a worldwide organization to provide support education and funds for research.

One of the more difficult problems I had with Guillain-Barré was trying to remember its name. When I was first told what I had, I thought it was the name of two french dancers instead of french doctors. I was lucky that they dropped Landry’s name off the syndrome. As it was, it took me awhile to remember it.

For sure, when you have gone through the many effects of Guillain-Barré, you do not easily forget its name.

When Bill Fineman and Hank Friedman walked into my hospital room, I knew I was going to make it. Until that time, I was not sure and found it hard to believe the doctors.

Those visits gave me the hope I needed and planted the seeds for this organization.

Meeting so many GBS patients and their families has been a fulfilling experience. We have read your letters, spoken to you by phone and visited many of you. You know you are not alone.

A GBS chapter meeting is a very interesting experience. After discussing their various problems, victims always seem to leave the meetings in better spirits. Of course, they spend part of the meeting trying to impress the other members that the doctor said that they are the worst case of GBS he has ever seen. The doctors usually omits the fact that this may be the first case he has ever seen.

Dr. Steinberg’s Book has been sent all over the world. It is now in the fourth edition. The fact is we did not even let him recover before we had him working for the organization. Getting GBS can make you famous, but I would not advise it.

This Symposium is a fulfillment of an idea that started almost three years ago. We wanted to have a meeting that included the most knowledgeable in the field of GBS and we have done it. We wanted to have a meeting in which the patients, families, and friends could listen, learn and participate and we have done it. Many thought that we would never get so many GBS patients to come together at one time and again we have done it.

Statistics are that one to one and a half out of 100,000 get GBS a year. Do you realize that you are sitting next to a statistical phenomena? Imagine, you may be representing between 20 and 30 million in population.

This is Estelle’s organization. I got GBS and Estelle got busy. She got moving and has never stopped. Some people write books, some people act and some people become ABC Network’s Man of the Week. My wife starts organizations. Our lives have changed. I now have 10,000 friends in my life.

It certainly has been a long and interesting trip. We could have lived without it, but we made the most of it.”

CHEERS TO 30 YEARS! Our very first International Symposia was held in Philadelphia on October 2, 1988 – Nearly 30 years to the date, we are excited to celebrate our 15th Biennial event! We welcome you to this unique chance to get together with fellow patients, caregivers and loved ones (it’s like old friends meeting for the first time). Our sessions will be presented by our prestigious Global Medical Advisory Board Doctors and other healthcare experts from ‘our world’. Help us celebrate three decades of bringing our community together. We’re so glad you’re here!

30


COLORED LANYARDS NEW! WELCOME WALK Join us at 4pm at the Boat Dock ( just past the pool, on Mission Bay Boardwalk) for our 2018 Welcome Walk! Please wear your provided tee shirt! We will walk through the Hilton Property (approx a .45 mile walk) to our opening reception!

If you wish to not participate in the Welcome Walk please join us at 4:30 at the Bayside Terrace for our welcome reception and please be sure to wear your provided tee shirt!

MEET & GREET WITH SWEETSOur Welcome Reception will conclude with a Meet & Greet with Sweets desserts by Region. A wonderful time to meet members in your local area!

This event is graciously sponsored by Grifols.

RAFFLE BINGO & SCAVENGER HUNTFRIDAY BINGO Visit our exhibitor booths & collect ALL your bingo stamps!* Once your card is complete, stop by the registration table and redeem for 10 FREE raffle tickets!

SCAVENGER HUNT SATURDAY Get your clue at each exhibitor booth and solve the puzzle! If you get the answer right, you can redeem your Scavenger Hunt answer card at the registration table for 10 FREE raffle tickets!

*HINT! This puzzle is a clue for the location of our 2020 symposium.

GENERAL INFORMATION

© 2017 Kedrion Biopharma Inc. All Rights Reserved. August 2017 CO-0533-00-2017D

Manufacturer of

PLASMA-DERIVED THERAPIES

LEARN MORE AT KEDRION.US

VISIT OUR BOOTH #3

Colored Lanyards for easy identification! What your lanyard says about you:

Speakers, Sponsors &

Staff: BLACK

GBS: BLUE

CIDP GREEN

Caregivers, Family & Friends:

YELLOW

Variant (MMN,

Anti-MAG): ROYAL BLUE


REGIONAL DIRECTORS

REGIONAL DIRECTORS 2018 A Tee Shirt to Tie You Together

Please join us at our Thursday Welcome Walk & Opening Reception in your complimentary tee shirt. Each color represents your geographic region to make local connections extra easy! A very special thank you to our Regional Directors – tireless volunteers who work diligently to ensure our volunteer team has the support they need. Get to know them below!

NORTHEAST Jim Yadlon & Assistant RD Sheila Blaine • [email protected] • [email protected] • Connecticut, Maine, Massachusetts,

New Hampshire, New Jersey, New York, Rhode Island, Vermont

NORTH CENTRAL Bill Ansley• [email protected]• Kentucky, Michigan, Ohio,

Pennsylvania, West Virginia

MID-ATLANTIC Rick Forney• [email protected]• Delaware, Maryland, North Carolina,

Virginia, Washington DC

SOUTHEAST Merrilyn Macurak• [email protected]• Alabama, Florida, Georgia, Puerto

Rico, South Carolina, Tennessee

MIDWEST/MID-CENTRAL Jon Toumey• [email protected] • Illinois, Indiana, Iowa, Minnesota,

Nebraska, North Dakota, Oklahoma, South Dakota, Wisconsin, Wyoming

SOUTHWEST Yvonne Bishop• [email protected]• Arizona, Colorado, Kansas,

Missouri, New Mexico, Utah

SOUTH CENTRAL Julie Bell• [email protected]• Arkansas, Louisiana, Texas, Mississippi

WEST Lee Ann Gooseman• [email protected]• Alaska, California, Hawaii, Idaho, Montana,

Nevada, Oregon, Washington

INTERNATIONAL • Patricia Blomkwist-Markens• [email protected]• France, Canada, Australia, Japan,

Germany, Italy , Mexico, Nepal, Netherland, Tobago, Trinidad, England

Keynote Speakers


RICHARD A. LEWIS, MDProfessor of Neurology at Cedars-Sinai Medical Center, Los Angeles, CA

Richard A. Lewis, MD, is Professor of Neurology at Cedars-Sinai Medical Center, Los Angeles, CA.

Dr. Lewis completed his undergraduate work at Union College, Schenectady, NY, and received his MD degree from the Medical College of Virginia, Richmond, VA. He completed his neurology residency at the University of Pennsylvania, Philadelphia, PA, where Drs. Arthur Asbury, Robert Lisak, Mark Brown, Gareth Parry, and David Cornblath stimulated his interest in inflammatory neuropathies. He has had faculty appointments at University of Pennsylvania, University of Connecticut, Eastern Virginia Medical School and Wayne State University, where he was Associate Chair of Neurology.

Dr. Lewis’ research interests include electro diagnostic findings in demyelinating neuropathies—both acquired and inherited. He is recognized for the Lewis–Sumner Syndrome, the disorder that he, Dr. Austin Sumner, and Drs. Brown and Asbury described in 1982.

Dr. Lewis serves on the GBS|CIDP Foundation International’s Global Medical Advisory Board, Peripheral Nerve Society and Board of Directors of the Inflammatory Neuropathy Consortium.

MICHAEL COLEMENPatient Activist, GBS Survivor

We are delighted to announce our keynote speaker for the 2018 Patient Symposium is actor (“Happy” on ABC’s Networks show Once Upon a Time), patient activist and GBS survivor, Michael Colemen. Michael’s inspiring patient journey, from overwhelming fear to a declaration of lifelong happiness, is sure to inspire hope and healing to the entire community. Join us in welcoming Michael to the 2018 Patient Symposium team!

KEYNOTE SPEAKERS

SYMPOSIUMSAN DIEGO

CALIFORNIA

2018

RAFFLESBe sure to stop by the Foundation Registration Table on Friday & Saturday to buy raffle tickets for these incredible items! Raffle tickets are 1 ticket for $5 or 3 tickets for $10! Join in on our Exhibitor Bingo & Scavenger hunt for a chance to win tickets!

Apple iPad with WiFi, 32GB, Space Gray (2017 Model) $325 value!

(2) Amazon Echo + Sengled Starter Kit Bundle $150 value!

(2) Fitbit Blaze Smart Fitness Watch $170 value!

Walk & Roll T-Shirt Quilt Don’t miss your chance to win this one-of-a-kind Walk & Roll T-Shirt Quilt featuring tee shirts from walks around the country! This item was quilted with TLC by South Carolina’s finest quilters. A special thank you to Merrilyn Macurak for her efforts in this endeavor! PRICELESS!

GBS Turtle Firepit Crafted and donated by GBS patient Sean Young. PRICELESS!

Hilton Mission Bay Gift Basket Thank you to the Hilton Gift Shop for donating this beautiful basket! $200 Value!

The following item have been generously sponsored by Platform Q

iRobot Roomba 960 Vacuum $550 Value!

And more to come! FOLLOW US ON

#GBSSym2018 #CIDPSym2018


GLOBAL MEDICAL ADVISORY BOARD SPEAKERS

DR. KENNETH GORSONChairman, GBS|CIDP Global Medical Advisory BoardProfessor of Neurology, St. Elizabeth’s Medical CenterBoston, Massachusetts

Kenneth C. Gorson, M.D. is a Professor of Neurology in the Department of Neurology at St. Elizabeth’s Medical Center, Tufts University School of Medicine, in Boston. Dr. Gorson has published over 90 original peer-reviewed research articles, book chapters, and reviews pertaining to Guillain-Barré syndrome, chronic inflammatory demyelinating polyneuropathy (CIDP), paraprotein associated neuropathies, vasculitic neuropathy, and various other inflammatory and immune-mediated disorders of the peripheral nervous system. His clinical and research expertise extends to patients with neuropathies associated with diabetes, connective tissue disorders, and cancer, inherited peripheral neuropathies, and disorders of muscle, myasthenia gravis, and amyotrophic lateral sclerosis. Professor Gorson also has extensive expertise in the medical management of numerous chronic neuropathic and musculoskeletal pain disorders. He has been a principal investigator in several clinical research studies, including experimental treatment trials for CIDP, multifocal motor neuropathy, myasthenia gravis, diabetic neuropathy, painful neuropathies, and post-herpetic neuralgia. He has lectured widely to medical specialists and patient support groups on various topics in the field of neuromuscular diseases.

Dr. Gorson is the Chairman of the Global Medical Advisor Board for the GBS|CIDP Foundation international, the United States Principal Investigator and country coordinator for the International Guillain-Barré Outcome Study (IGOS) and also serves on the Steering Committee for IGOS, Secretary for the Inflammatory Neuropathy Consortium, serves on the editorial board for Muscle & Nerve, and is an active member of the American Academy of Neurology (AAN), American Association of Electrodiagnostic Medicine, and Peripheral Nerve Society, and has previously served on the sub-committee responsible for the selection of neuromuscular courses for the annual meeting of the Academy. He also served as a Counselor for the Neuromuscular Section for the AAN.

In his teaching capacity, Dr. Gorson has served as Director of the Tufts Neurology Residency Training Program and was responsible for resident candidate selection, and supervises the daily academic activities of the Neurology resident trainees. He is also an integral part of the teaching staff for the neurology and medical interns and residents at St. Elizabeth’s Medical Center and medical students from Tufts University School of Medicine.

GLOBAL MEDICAL ADVISORY BOARD

Kenneth C. Gorson, MD Chairman

Bart C. Jacobs, MD Vice Chairman

Jeffrey Allen, MD

Vera Bril, MD

David R. Cornblath, MD

Peter D. Donofrio, MD

John D. England, MD

Diana Castro, MD

Jonathan Katz, MD

Carol Lee Koski, MD

Richard A. Lewis, MD

Robert Lisak, MD

Eduardo Nobile-Orazio, MD, 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. Willison, MBBS, PhD, FRCP

Gil I. Wolfe, MD, FAAN

Meet the Symposium Presenters from our Global Medical Advisory Board



DR. BART JACOBSVice Chairman, GBS|CIDP Global Medical Advisory BoardProfessor in Immunology and Neurology, The Erasmus University Medical CenterRotterdam, Netherlands

Bart C. Jacobs, MD, trained in Immunology and Neurology at Erasmus Medical Center, Netherlands.

In 1997, he completed a PhD thesis on the pathogenesis of Guillain-Barré syndrome.

Since 2003, Dr. Jacobs has worked as a staff neurologist in the Department of Neurology and as a consultant and workgroup leader in the departments of Immunology at EMC. Since 2008, he has been Associate Professor of Neurology and Immunology. Dr. Jacobs’ research is focused on the epidemiology, clinics, pathogenesis and treatment of immune-mediated neuropathies, especially GBS. He has a special interest in preceding infections, molecular mimicry, anti-ganglioside antibodies, genetics, intravenous immunoglobulins and predicting outcomes in GBS. Dr. Jacobs also initiated the International GBS Outcome Study (IGOS,) a worldwide collaborative study from the Inflammatory Neuropathy Consortium on the monitoring and prediction of the clinical course of GBS.

Dr. Jacobs is the vice-chair of GBS|CIDP Foundation International’s Global Medical Advisory Board. He is also a member of the Education Committee Postgraduate School of Molecular Medicine, a member of the Education Committee Master of Science Infection and Immunity, and a Board member of the Dutch Neuromuscular Research Center. He is a member of the Dutch Society of Neurology, Dutch Society of Pediatric Neurology, Dutch Society of Immunology, Dutch Society of Glycobiology, and International Society of Neuro-immunology, European Neurological Society, Peripheral Nerve Society, and Inflammatory Neuropathy Consortium.

DR. JEFFREY ALLENAssistant Professor of Neurology, University of MinnesotaMinneapolis, Minnesota

Jeffrey Allen is an Associate Professor in the Department of Neurology at the University of Minnesota, Minneapolis, MN and adjunct faculty at Northwestern University, Chicago, IL. He completed his neurology residency at Tufts University, and neuromuscular fellowship at Harvard.

Dr. Allen’s research has focused on defining the clinical and diagnostic boundaries of the inflammatory neuropathies, as well as investigating treatments for those disorders.

He serves on the GBS|CIDP Foundation International Global Medical Advisory Board as well as the Inflammatory Neuropathy Consortium (INC) board. Dr. Allen also serves as the primary investigator for the Foundation’s registry.

DR. DAVID SAPERSTEINNeurologist, Phoenix Neurological AssociatesPhoenix, Arizona

Dr. Saperstein has spent the last 20 years actively involved in research and patient care involving GBS and CIDP. He is currently in practice at Honor Health Neurology in Phoenix, AZ, where he is co-director of the GBS|CIDP Foundation Center of Excellence as well as a Clinical Associate Professor of Neurology at the University of Arizona College of Medicine.

Dr. Saperstein is a graduate of Boston University School of Medicine. He performed a Neurology residency at Wilford Hall USAF Medical Center in San Antonio, Texas, followed by a Neuromuscular Disease/Clinical Neurophysiology fellowship at the University of Texas Southwestern Medical Center in Dallas. Dr. Saperstein is board

certified in Neurology, Neuromuscular Medicine and Electrodiagnostic Medicine.

In addition to caring for patients with GBS and CIDP, he sees patients with other disorders of the nerves and muscles. Dr. Saperstein is active in multicenter research studies of treatments for neuropathies, amyotrophic lateral sclerosis, myasthenia gravis, and myositis. He often lectures to physicians and patients throughout the U.S. and has authored or co-authored over 50 journal articles, book chapters and abstracts regarding various aspects of nerve and muscle disease.

DR. DIANA CASTROAssistant Professor of Pediatric Neurology, UT SouthwesternMedical CenterDallas, Texas

Diana Castro, M.D., is a neurologist at Children’s Health℠ who specializes in pediatric neurology and neuromuscular medicine. She is also an assistant professor of pediatrics and neurology and neurotherapeutics at UT Southwestern Medical Center.

After earning her medical degree from the Pontificia University Javeriana in Bogota, Colombia, Dr. Castro completed her pediatric residency at Beth Israel Medical Center in New York. She completed fellowships in pediatric neurology and neuromuscular medicine at UT Southwestern Medical Center.

She is the co-director of the Muscular Dystrophy Association Clinic in Dallas and is involved in multiple research protocols for spinal muscular Atrophy and Duchenne Muscular Dystrophy in the pediatric population.

Dr. Castro also has research interests in acquired and congenital neuropathies, including Guillain-Barré Syndrome, chronic demyelinating polyneuropathy and Charcot-Marie-Tooth disease.

Dr. Castro currently serves on the GBS|CIDP Foundation International Global Medical Advisory Board.



DR. JOEL STEINBERGHospitalistCooper University Health Care Salem, New Jersey

Joel Steinberg, MD, PhD, CWS, joined the GBS|CIDP Foundation International as a founding member when he was still recovering from GBS in 1980. He has several positions within the Foundation, including member of the Board of Directors and Global Medical Advisory Board.

Dr. Steinberg also provides support group services for local and global chapters.

He authored much of the Foundation’s educational materials, including the booklet, GBS, CIDP and Variants: An Overview for the Layperson, and a pamphlet, GBS: A Guide for Acute Care for Medical Professionals. Dr. Steinberg also authored a book with Dr. Gareth Parry for the American Academy of Neurology’s Patient Education Series, GBS: From Diagnosis to Recovery.

Dr. Steinberg obtained his PhD in physiology.

DR. CAROL LEE KOSKIRetired professor and director of the Neuromuscular DivisionUniversity of Maryland School of Medicine Sante Fe, New Mexico

Carol Lee Koski, MD, has been retired from University School of Medicine, Baltimore, MD since 2006, where she served as a professor of neurology and director of the Neuromuscular Division and the Physicians Infusion Clinic—Department of Neurology.

Dr. Koski received her medical degree from University of Maryland School of Medicine, Baltimore, MD. She completed residencies at University of Maryland Medical System, Baltimore, MD, and Jackson Memorial Hospital, Miami, FL, and fellowships in neuromuscular disease, neurochemistry, and Neuroimmunology at University Hospital, Baltimore, MD, the Eunice Shriver Center, Waltham, MA, and Neuroimmunology Branch of National Institutes of Health, Bethesda, MD, respectively.

Dr. Koski’s major research interests include complement in inflammatory neuropathy, ovarian hormones in neuronal survival in central nervous system inflammation, clinical criteria for CIDP and MMN, as well as outcomes relative to the clinical course and therapy of patients. She has co-authored numerous book.

Dr. Koski is a member of the GBS|CIDP Foundation International Global Medical Advisory Board.

DR. DAVID CORNBLATHProfessor of NeurologyThe Johns Hopkins University School of Medicine Director of the Neurology EMG Unit The Johns Hopkins Hospital, Baltimore, MD

Dr. Cornblath’s specialty interests are neuromuscular diseases and neuropathies. He is currently involved in a number of clinical trials of neurotrophic agents of ALS and neuropathy. He received his degree from Case Western Reserve University, Cleveland, OH, in 1977, and completed his internship at University Hospitals, Cleveland, OH, in 1978. His neurology residency was completed at the Hospital of the University of Pennsylvania, Philadelphia, PA, under the direction of Dr .Arthur K. Asbury. Dr. Cornblath was an MDS neuromuscular fellow at the same institution.

In 1982, he transitioned to the Department of Neurology at The Johns Hopkins University School of Medicine, Baltimore, MD, to start and develop the Neurology EMG Unit. In 1993, Dr. Cornblath was an Honorary Professor of Neurology, Hebei Medical College and Second Teaching Hospital of Hebei Medical College, Shijiazhuang, PRC.

Dr. Cornblath is an active member of a number of professional associations as well as the European Neurological Society. He is also on the editorial board of Annals of Neurology and Muscle & Nerve. Dr. Cornblath is a member of the GBS|CIDP Foundation International Global Medical Advisory Board and former member of the Foundation’s Board of Directors.

!CHECK IT OUTOur GMAB members

all take part in the following committees:

FELLOWSHIP COMMITTEEMEDICAL LIAISON

COMMITTEEWRITERS & REVIEWERS

COMMITTEETALKS & PRESENTATIONS

COMMITTEEGRANTS COMMITTEE

CENTERS OF EXCELLENCE COMMITTEE

?GET TO KNOW OUR GLOBAL MEDICAL ADVISORY BOARD

Did you know that our Global Medical Advisory Board (GMAB) members are all volunteers? We are so fortunate

to have a dedicated team of the world’s most knowledgeable physicians supporting our mission and our members.

Speakers & Panelists from the GBS|CIDP Community of Health & Wellness Professionals



LYNN KUTTNAEUR, PHDPsychologist West Hollywood, CA

For over thirty years, Dr. Kuttnaeur has been working with a wide range of issues including but not limited to depression, anxiety, trauma, intimacy and relationship difficulties. She has extensive experience helping people cope with emotional challenges of physical diseases such as cancer, MS, and other neurological disorders.

MARIA ILLIANO HARRIS & CHARLA FRONCZKOWKIBryn Mawr Rehabilitation Bryn Mawr, PA

Maria Harris, PT, DPT, CBIS earned her Doctorate of Physical Therapy from Thomas Jefferson University Hospital and has practiced at Bryn Mawr Rehabilitation Hospital in the areas of traumatic brain injury, non-traumatic brain injuries including strokes, polytrauma, spinal cord injuries, amputations, and numerous neurological disorders including GBS/CIDP, MS, and Parkinson’s since 2011. To better serve her patients, Maria has obtained certifications as a Certified Brain Injury Specialist, and is a certified user for the BalanceWear Torso Weighted Vest and certified user of the Bioness Vector. She serves as a lab instructor for Widener University PT department teaching hands on facilitation and evaluation and examination of a patient with CVA. Maria has also provided guest lectures at

Thomas Jefferson University Hospital in the topics of Orthotics. Maria is active in the APTA in both the state and national arenas, and is a member of the neurology section.

Charla Fronczkowki earned a Masters Degree in Occupational Therapy from Thomas Jefferson University. She began working at Bryn Mawr Rehab in 2014, further learning about and working with populations including stroke, auto-immune diseases, spinal cord injury, and orthopedic trauma. Her interests include traveling worldwide, yoga, and reading.

JEFFREY WERTHEIMER, PHD, ABPP-CNClinical NeuropsychologyCedars-Sinai Medical Center and the California Rehabilitation Institute in Los Angeles

Jeffrey Wertheimer, PhD, ABPP-CN, is a board certified Clinical Neuropsychologist and Chief of Psychology and Neuropsychology Services at Cedars-Sinai Medical Center and the California Rehabilitation Institute in Los Angeles. He is also the Director of Training for the Neuropsychology Division. Dr. Wertheimer’s focus is in neuropsychological and psychological assessment, psychotherapy, behavioral management and pain management intervention in both inpatient and outpatient settings. Dr. Wertheimer is also the Chief Research Consultant for The Parkinson Alliance and a consultant for the Neuromodulation Division for Medtronic, Inc. Dr. Wertheimer focuses a significant amount of time in research activities, preparing scientific manuscripts and lecturing nationally and internationally. His research interests psychological adjustment and resilience in the context of medical conditions,

inter-professional collaboration, cognitive and neuropsychiatric profiles in movement disorders (i.e., Parkinson’s disease and deep brain stimulation outcomes), and cognitive and functional outcomes for individuals who have sustained traumatic brain injury.

RUTH HUIZINGA, PHDPost Doctoral ScientistErasmus University Medical CenterRotterdam, the Netherlands2014 Benson Fellow Recipient

Ruth Huizinga studied medical biology at the Vrije Universiteit in Amsterdam, The Netherlands, where she developed a strong interest in neuroimmunology. Her PhD-research, performed in the group of Professor Sandra Amor, focused on autoimmunity to neuronal antigens in multiple sclerosis.

After obtaining her degree in 2008, she joined the group of Professor Bart Jacobs at the department of Immunology (Erasmus MC, Rotterdam, The Netherlands) to work as post-doctoral researcher on the pathogenesis of the Guillain-Barré syndrome (GBS). She investigated the mechanism and extent of dendritic cell activation by Campylobacter jejuni in healthy persons and patients with GBS.

As visiting scientist in the laboratory of Professor Hugh Willison (University of Glasgow, Scotland, UK), she further studied the development of antibodies to glycolipids in mice.

In 2014, back at the Erasmus MC in Rotterdam, she obtained the Benson Clinical Research Fellowship (from the GBS/CIDP Foundation International) to elucidate whether innate responsiveness to microbial triggers is predisposing to the development of GBS. In 2015 she was awarded the AK Asbury


SPEAKERS & PANELISTS

prize for best oral presentation at the biennial meeting of the Peripheral Nerve Society (Quebec, Canada) for her work on innate immunity to Campylobacter jejuni in GBS.

Over time, she established a unique collection of leukocytes from patients with immune-mediated neuropathies that will be used to study the pathogenesis and to identify cellular biomarkers that predict the response to immunomodulatory treatment.

TED YEDNOCK,PHDScientist / EVP / Chief Scientific AdvisorSan Francisco Bay Area

Dr. Yednock joined Annexon Biosciences as Chief Scientific Officer in November 2013. Dr. Yednock was previously Chief Scientific Officer for Prothena Corporation, Head of Research for Elan Pharmaceuticals and a Scientist at Athena Neurosciences. While at Athena, he was the scientific inventor of Tysabri®, a blockbuster monoclonal antibody for the treatment of multiple sclerosis. In addition to his work in multiple sclerosis, Dr. Yednock has contributed to the invention or progression of numerous drugs in the areas of Alzheimer’s disease, Parkinson’s disease, amyloidosis, rheumatoid arthritis, psoriasis and Crohn’s disease. Dr. Yednock earned his B.S. in biology and chemistry from the University of Illinois and his Ph.D. in anatomy and cell biology from the University of California San Francisco.

DANE CHRISTIANSENHealth and Medicine Counsel of Washington DC

Dane Christiansen is Executive Vice President of the Health and Medicine Counsel of Washington and a long-time advocate for the rare disease community. He has worked

in government relations since 2004 and has a background in healthcare policy and grassroots mobilization. He has expertise in the annual appropriations process and is familiar with many of the medical research opportunities and healthcare challenges facing patients with rare, chronic, and complex illness. He holds an undergraduate degree in political science from Marietta Collage and a Masters in Business Administration from Saint George’s University.

JULIE ROWIN, MDAPAC Centers for Pain Management

Dr. Julie Rowin is a clinical neurologist and neuromuscular sub-specialist with a special interest in integrative medicine. She is board certified in Integrative Medicine, Medical Acupuncture, and Neurology/Neuromuscular Medicine. Dr. Rowin is currently in clinical private practice in Westchester Illinois and previously served as Associate Professor of Neuromuscular Medicine at Rush University and subsequently at the University of Illinois at Chicago. She has 25 years of clinical experience with a special interest in the integrative and holistic management of autoimmune disease and neuropathy.

JANEV FEHMI, MD Nuffield Department of Clinical Neuroscience (NDCN)

I have been a doctor for 8 years, 3 of which I have been training in neurology as part of the UK National Training Programme. Thanks to the Benson fellowship I am now embarking on a PhD at Oxford at the Nuffield Department of Clinical Neuroscience (NDCN).

My research project will aim to reveal key mechanisms driving GBS and CIDP using a novel technique whereby human nerves can be grown from stem cells in the laboratory.

I hope this will also provide me with the skills to become an academic neurologist, treating patients with these debilitating conditions, whilst contributing to research trying to better understand these conditions.

I have some previous experience doing research, having completed a MSc, have presented at international conferences, published articles in peer reviewed journals, and most recently I worked as part of a team for 6 months in Cambodia to help develop the country’s first neurology training programme.

LINDA BRUBAKER, MD UC San Diego Health

Linda Brubaker, MD, is a board-certified urogynecologist who specializes in treating adult women with recurrent urinary tract infections and providing non-surgical solutions for bladder/bowel control problems and pelvic organ prolapse.

As a professor in the Department of Obstetrics, Gynecology, and Reproductive Sciences, Dr. Brubaker instructs medical students, residents, and fellows at UC San Diego School of Medicine. She is the editor-in-chief of Female Pelvic Medicine & Reconstructive Surgery and has authored hundreds of articles on topics related to female pelvic health. Her National Institutes of Health (NIH)-funded research focuses on urinary incontinence, pelvic floor disorders, overactive bladder and recurrent urinary tract infection. She is also NIH-funded to study bladder health and prevention of common urinary symptoms in women.

Prior to joining UC San Diego Health, Dr. Brubaker served as the dean and chief diversity officer at Stritch School of Medicine, Loyola University Chicago, where she was also a tenured professor. She held a primary appointment in obstetrics/gynecology with a joint appointment in urology.

Dr. Brubaker completed a fellowship in female pelvic medicine and reconstructive surgery at Rush University Medical Center


SPEAKERS & PANELISTS

in Chicago, where she also served as chief resident during her obstetrics/gynecology residency. She earned her medical degree at Rush Medical College and holds a master’s degree in clinical research design and statistical analysis from University of Michigan School of Public Health. She is board-certified in obstetrics/gynecology and female pelvic medicine and reconstructive surgery. She is a fellow of the American Congress of Obstetricians and Gynecologists (FACOG).

Dr. Brubaker serves as a director of the American Board of Obstetrics and Gynecology and is a member of the American Gynecological & Obstetrical Society. She has also served as the president of the American Urogynecologic Society and the Society of Pelvic Surgeons. She is the recipient of many awards, including the Chicago Health & Medicine Award and the Warrior Award. She was recently awarded the Jack Robertson Lifetime Achievement Award from the American Urogynecologic Society for her outstanding achievements in the field of female pelvic medicine and reconstructive surgery.

New Feature! Symposium Zen Den

Meet Zen Den Facilitator PAM BUTLER AND STERLING PAINTONHow do you cope with the stress of living with a rare neurological condition? This year we are excited to announce the inclusion of

a new feature – the 2018 Symposium Zen Den! Throughout the weekend the Zen Den will provide a place to unplug, relax and enjoy discovering the best practices for stress management. Our Zen Den will be facilitated by Pam Butler, certified meditation and yoga instructor, and a Transformational Bliss Coach, and Sterling Painton a certified Yoga instructor from Pittsburgh, PA. Concurrent session will be running on Friday Nov. 2 and Saturday Nov. 3 in the Terrazza Ballroom. A schedule of Zen Den activities will be posted in front of the room.

STERLING PAINTON Owner, Yoga Instructor

In 2002, Sterling Painton opened Sterling Yoga and Wellness Center, LLC. Her mission is to create a yoga community that nourishes the growth of our body, mind and spirit. The studio has a strong focus on therapeutics and alignment honoring the Iyengar tradition.

Sterling has completed several intensives and week-long Teacher Trainings with Senior Iyengar teacher Manouso Manos whom she currently studies. Currently, Sterling is completing a Therapeutic Program in LA with her teacher, Manouso Manos. In 2013, Sterling completed the first Advanced Teacher Training Program with Judith Hanson Lasater. Over the past several years, Sterling has become a Relax & Renew Certified Teacher, Certified in Experiential Yoga Anatomy and various workshop CEC

hours with Judith Lasater, Cora Wen and Doug Keller. She also completed a year-long, deep study in the Iyengar tradition with Sara AzariusEichmiller. For several decades, Sterling has been an advocate of older adult fitness teaching Senior Chair Yoga and group exercise with a specialty in People who are dealing with Parkinson Disease since 2003. In 2001, Sterling received her 200 hour Teacher Training with the Himalayan Institute of Honesdale, PA and currently holds her 500 hour Teacher Training with Cora Wen’s Yoga Bloom Certification Program.

New feature! Ig Nurse

AMY CLARKE, RN, IGCN Infusion nurse, Amy Clarke will be joining our roster of 2018 Symposium presenters with a brand new session, All About the Infusion Process (Saturday, Nov. 3, 10:30-11:00am - International Ballroom) She will be discussing the infusion process from A to Z, and is happy answer all of your questions. Amy Clarke is a registered nurse and has been in the specialty and home infusion space since 1994.

PERSONALIZED IG THERAPY AT HOME

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FOLLOW US ON



BENSON FELLOW & AREA MAP

2018 BENSON FELLOW ANNOUNCEMENT

The GBS|CIDP Foundation International has established the Benson Fellowship to fund Peripheral Neuropathy Fellowships in honor of Robert Benson, a survivor of Guillain-Barré Syndrome, and his wife Estelle Benson. The Foundation voted to endow over $1,600,000 of its financial resources to initially fund the Fellowship. The purpose of the Benson Fellowship is to encourage professional training in the peripheral inflammatory neuropathy area for medical doctors, and to encourage philanthropic support to help address this significant challenge within the medical community.

The GBS|CIDP Foundation International is pleased to announce the 2018 Benson Fellowship will be awarded to Dr. Janev Fehmi of the Nuffield Department of Clinical Neuroscience (NDCN) for her study in characterising the pathogenic mechanisms of nodal auto-antibodies in the inflammatory neuropathies. Dr. Janev will be joined by Dr. Ruth Huizanga on Friday, Nov. 2 for the Benson Fellow Recap and Announcement presentation, 9:30-10:00am.

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YOU ARE

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ABOUT THE GBS FOUNDATION

Guiding you every step of the way

No one sees a GBS or CIDP diagnosis coming. And when it hits, no one is fully prepared for what follows. That’s why we are here – to be a supportive ally on a journey you never planned.

The GBS | CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related conditions through a commitment to support, education, research and advocacy. For nearly 40 years, the Foundation has supported those touched by GBS | CIDP in an effort to guarantee that every patient has access to an early and accurate diagnosis, proper treatment, and the opportunity for an appropriate recovery.

We are committed to ensuring that no one goes through this experience alone. That’s why we provide knowledgeable support for patients and caregivers alike – assisting all who are affected by the illness, directly or indirectly.

The GBS | CIDP Foundation International is comprised of more than 35,000 member patients and families, each of whom has knowledge, insight, and perspective to offer one another. Our role is to share that collective experience, expertise and empathy with everyone who needs it, no matter where you are in the recovery process.

Leveraging the combined expertise from 44 Centers of Excellence (hospitals), a 20-member Global Medical Advisory Board, 160 member chapters worldwide, and more than 75 U.S. chapter support group meetings each year, we’ve built a patient-centered community of healing like no other. Our powerful network ensures we can coordinate patient care, advocate for public policies that benefit and support our patient community, and make grants to fund research for a cure. No other organization does what we do so well for so many.

Our mission was born out of the vision of our founder, Estelle Benson, who sat around her kitchen table with eight friends nearly four decades ago and imagined a world where no one with GBS or CIDP would suffer alone. Today, we are making Estelle’s dream a reality – helping patients on their way to a new normal and providing reason for hope at every stage of the recovery process.

We know what’s needed to help you recover, reset, and rediscover the life you enjoyed before GBS or CIDP. We also know how essential it is to support the medical professionals, caregivers and loved ones who will help you heal. The disorder is only rare until it’s you. But when you need us, we will be here.

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SCHEDULE

Thursday, November 1stTIME EVENT LOCATION12:00-4:00PM Registration Foyer4:00PM Welcome Walk & Roll Meet for along Mission Bay

Boat Dock “look for the red white and blue sails”

4:30PM Welcome Reception Bayside Terrace6:00PM Desserts by Region Sponsored by Grifols Varied Meeting Spaces

?DID YOU KNOW?

Did you know nearly 2,000 people attended our GBS|CIDP Walk & Rolls this year?! Find out more…

www.gbs-cidpwalk.org

!CHECK IT OUT

Have you been to a local chapter meeting? Find one near you…

www.gbs-cidp.org/events-calendar/

“ZEN DEN” Meditation, Mindfulness, and YogaLOCATION: Terrazza Ballroom FRIDAY & SATURDAY

Yoga Nidra – Calm the Mind, Calm the Body How to reduce Anxiety and Strengthen the Nervous SystemImprove your Posture in 15 minutes a dayHow do we stay Balanced – Literally and Figuratively


SCHEDULE

Friday, November 2ndTIME EVENT LOCATION7:15-8:15AM Continental Breakfast International Ballroom8:15-8:30AM Welcome Introduction – Lisa Butler, Executive Director, GBS|CIDP Foundation International International Ballroom8:30-9:00AM Keynote Address – Michael Coleman, actor/advocate International Ballroom9:00-9:30AM Managing Your Fatigue – Dr. Bart Jacobs International Ballroom9:30-10:00AM Benson Fellow Recap & Announcement – Dr. Ruth Huizinga & Dr. Janev Fehmi International Ballroom10:00-10:30AM Morning Break Exhibitors Foyer10:30-11:00AM Research Update – CIDP & MMN: Dr. Jeff Allen Sponsored by Shire International Ballroom10:30-11:00AM Research Update – GBS: Dr. Bart Jacobs Mediterranean Ballroom11:00-11:30AM Breakout Sessions – CIDP/MMN: Treatments: Dr. David Saperstein Sponsored by

KrogerInternational Ballroom

11:00-11:30AM Breakout Sessions – GBS: Promising New Therapies: Dr. Ted Yednock Mediterranean Ballroom 11:30AM-12:00PM Breakout Sessions – CIDP/MMN: ‘What if My Treatment Isn’t Working?’:

Dr. David CornblathInternational Ballroom

11:30AM-12:00PM Breakout Sessions – GBS: “Life After GBS”: Dr. Ken Gorson & Dr. Bart Jacobs Mediterranean Ballroom 11:30AM-12:00PM Breakout Sessions – Kids & Teen Session: Dr. Diana Castro Terrazza Ballroom12:00-1:30PM Lunch Pavilion/International Ballroom 12:00-12:30PM Subcutaneous Ig: A Simple Recipe Sponsored by CSL Behring Pavilion1:15-1:30PM Chair Aerobics! International Ballroom1:30-2:00PM Breakout Sessions – Sexual Health - for Men: Dr. Joel Steinberg and

Jeffrey Wertheimer, Ph.DTerrazza Ballroom

1:30-2:00PM Breakout Sessions – Sexual Health - for Women: Dr. Linda Brubaker and Dr. Lynn Kuttnauer

Mediterranean Ballroom

1:30-2:00PM Breakout Sessions – Insurance & Advocacy Updates: Dane Christianson International Ballroom2:00-2:30PM Adaptive Living Session: Maria illiano Harris & Charla Fronczowski

Sponsored by Patricia & Ronald SchardtInternational Ballroom

2:30- 3:00PM Afternoon Break Sponsored by CSL Behring Exhibitors Foyer3:00-3:50PM An Integrative Approach to Autoimmune Neuropathy: Dr. Julie Rowin International Ballroom4:00-5:00PM Ask the Experts – CIDP & MMN: Dr. Jeffrey Allen, Dr. David Saperstein,

Dr. Carol Lee Koski, Dr. Julie RowinInternational Ballroom

4:00-5:00PM Ask the Experts – GBS: Dr. Bart Jacobs, Dr. David Cornblath, Dr. Diana Castro, Dr. Richard Lewis


CONCLUDES Dinner on Your Own Enjoy San Diego!

“ZEN DEN” Meditation, Mindfulness, and Yoga See sessions on page 16

10:00-11:00AM Dr. Ken Gorson, Dr. Richard Lewis, Dr. Joel Steinberg, Dr. Carol Lee Koski Private Dining Room2:00-3:00PM Dr. Ken Gorson, Dr. Richard Lewis, Dr. Carol Lee Koski Private Dining Room

FRIDAY PHYSICIAN ONE-ON-ONE SESSIONS


SCHEDULE

Saturday, November 3rdTIME EVENT LOCATION7:30-8:30AM Continental Breakfast International Ballroom8:30-9:00AM Keynote Address – Understanding a Neurologists’s Approach to the Diagnosis &

Treatment of GBS|CIDP & Related Variants. Dr. Richard Lewis International Ballroom

9:00-9:30AM Managing Residuals – Dr. Ken Gorson International Ballroom9:30-10:00AM Managing Stress: Why & How – Dr. Richard Lewis & Dr. Lynn Kuttnauer International Ballroom10:00-10:30AM: Morning Break Exhibitors Foyer10:30-11:00AM Breakout Sessions – CIDP: “All About the Infusion Process”: Amy E. Clarke, RN IgCN International Ballroom10:30-11:00AM Breakout Sessions – GBS Session: Then & Now: Residuals? Relapse? Reoccurance?

Session: Dr. David Cornblath Mediterranean Ballroom

11:00-12:00PM Emotional Health Breakout Sessions – Patients: Dr. Lynn Kuttnauer, Psychologist, Ph.D.


11:00-12:00PM Emotional Health Breakout Sessions – Caregivers: Jeffrey Wertheimer, Ph.D. International Ballroom12:00-1:30PM Lunch Pavilion/International Ballroom12:00-12:30PM The IVIG Journey… Donor to Dosing Sponsored by Grifols Pavilion1:30-2:00PM Ways to Get Involved in the GBS|CIDP Foundation International Ballroom2:00-2:45PM PT/OT Session, Learn how to Exercise on Your Own:

Maria Illiano Harris & Charla Fronczkowski Sponsored by Patricia & Ronald SchardtInternational Ballroom

2:45-3:00PM Quick Break Sponsored by CSL Behring Exhibitors Foyer3:00-3:30PM Vaccinations – Dr. David Saperstein International Ballroom3:30-4:30PM Ask the Experts – CIDP & MMN: Dr. Ken Gorson, Dr. David Cornblath,

Dr. Bart Jacobs, Dr. Richard Lewis International Ballroom

3:30-4:30PM Ask the Experts – GBS: Dr. David Saperstein, Dr. Jeffrey Allen, Dr. Carol Lee Koski Mediterranean Ballroom5:00-8:00PM ‘Cheers to 30 Years’ Closing Celebration Pavilion

10:00-11:00AM – Bart Jacobs, MD, Jeff Allen, MD, Joel Steinberg, MD, Carol Lee Koski, MD, Private Dining Room1:30-2:30PM – David Saperstein, MD, Diana Castro MD, Carol Lee Koski, MD, Bart Jacobs, MD, Private Dining Room

?DID YOU KNOW?

Did you know the GBS|CIDP Foundation will be launching a Patient Registry this Fall?

Find our more gbs-cidp.iamrare.org

!CHECK IT OUT

Have you joined the conversation on our online Patient Forums? Check it

out: forum.gbs-cidp.org/forums

“ZEN DEN” Meditation, Mindfulness, and Yoga See sessions on page 16

10:00-11:00AM Bart Jacobs, MD, Jeff Allen, MD, Joel Steinberg, MD, Carol Lee Koski, MD Private Dining Room1:30-2:30PM David Saperstein, MD, Diana Castro MD, Carol Lee Koski, MD, Bart Jacobs, MD Private Dining Room

SATURDAY PHYSICIAN ONE-ON-ONE SESSIONS


BENSON VOLUNTEER AWARDS

SUPPORTJim YadlonBoard of Directors Member & Regional Director

It was 1973 when Jim had GBS. Forty-five years later, he is still “giving back” to our patients. Jim is a truly dedicated and committed member of our family. He is the cheerleader for so many patients and is always there when we need him and has tracked nearly 800 referrals since 2015! How very lucky we are to have him as a liaison, regional director and member of our board of directors!

EDUCATIONDr. Richard LewisGlobal Medical Advisory Board Member

We are so fortunate to have Rich Lewis as not only a member of the Global Medical Advisory Board, researcher, clinician, and consultant; but also as an individual dedicated to our cause. Rich has taken the most difficult medical information and “translated” it for the patients to understand; knowing how important knowing “what is wrong with you” is when dealing with these conditions. He has been there 24/7 for our community. They love him, as we do.

RESEARCHDr. Kazim A. SheikhGlobal Medical Advisory Board Member

It would be impossible to list the many research projects in which Kazim has been involved! GBS, CIDP and related neuropathies have become the focus of his amazing expertise. He has facilitated our research grant program and its committee. He has collaborated with us to speak with the NIH (National Institute of Health) to encourage more research in the area of inflammatory neuropathies. We thank him for his tireless work to further our mission.

ADVOCACYTonya CharlestonLiaison, Hill Day Advocate & Walk & Roll Chair

No one says “no” to Tonya! As the liaison for the Washington DC area, she could run for office! Tonya is always in touch with her local representatives cheering on our cause. She has attended many Foundation Hill Days advocating for our patients as a patient herself. GBS has never slowed her down, if anything; she has been energized by her passion for our mission. Just watch as she leads her local Walk & Roll at one of Washington DC’s National Monuments!

Announcing the 2018 Benson Volunteer Award Recipients!The Estelle Benson Volunteer Award is presented to individuals who have demonstrated an extraordinary commitment to the mission and goals of the GBS|CIDP Foundation International. Each individual reflects one of the four pillars upon which we base our purpose:

How fortunate we are to benefit from their caring and devotion to our GBS|CIDP community!


FOUNDATION STAFF & BOARD OF DIRECTORS

FOUNDATION STAFF

Lisa Butler Executive Director

Estelle Benson Founder

Camille Yee Chief Financial Officer

Maureen Neville Director of Marketing & Communications

Kelly McCoy Events & Outreach Manager

Jessica McManus Walk & Roll Manager

Lori Basiege Special Projects Coordinator

Kristen Mazzone Member Relations Assistant

Fannie Gee-Clark Data Development Assistant

BOARD OF DIRECTORS

Foundation Officers

Jim Crone President

Matthew LaRocco Vice President

Patricia H. Blomkwist-Markens Vice President of International Activities

Russell Walter Secretary

Jim Yadlon Treasurer

Board of Directors

Kenneth C. Gorson, MD

Elizabeth Emerson

Gail Moore

Dominick Spatafora

Shane Sumlin

Josh Baer

FOLLOW US ON



WELL WISHES

The following messages were received as “Well Wishes”… Thank You!

“Grateful to the entire GBS/CIDP team!” Jonathan Gould

“I am the NYC liaison and recognize how much good work the foundation does.” Dana Wyn Sherman

“Best wishes to all of the patients and caregivers who suffer with GBS, CIDP, MMN.” James Yadlon

“New to the Foundation? Welcome! GBS has been part of my family’s story for more than 30 years. Thanks to this organization — this family — your journey will not be walked alone. And one day...perhaps one day, our funded research will find the key and the cure!” Elizabeth Emerson

“I am a 9 year GBS survivor. I wouldn’t have recovered as much as I have and be here today without Mike’s love and support through this GBS journey.” Lee Ann and Michael Gooseman

“Kristen Morgan has made us proud since the day she was born. She has exceeded even our expectations. Starting the Pittsburgh Walk & Roll had been a passion since her first symposium in King of Prussia. Kristen has focused on staying strong, physically and mentally, by working closely with Sterling Painton of Sterling Yoga and Wellness. Way to go Kristen & Sterling!!!!” Jody Weaver

“We love you all the way up to heaven! — Mommy & Daddy” Jody Weaver

“For Tim and many others…” Deborah Erchick

“Best Wishes” Carl Tufts

Congratulations to the GBS/CIDP Foundation International for years of outstanding service to the patient and medical communities.Susan B. Steinberg, RNJoel Steinberg, MD, PhDMember, Global Medical Advisory BoardGBS Survivor; Past Vice-President


NEW PATIENT REGISTRY LAUNCHING THIS FALL!

This fall, the Foundation will be launching an online GBS|CIDP Patient Registry for patients with GBS|CIDP or variants of the condition. The GBS|CIDP Patient Registry will allow healthcare professionals working in the field of GBS, CIDP, or variants of the condition, access to critical, de-identified patient data, while pursuing medical advancements and breakthroughs. It will be hosted in partnership with the National Organization for Rare Disorders (NORD); an independent non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations who serve them. Studies of these conditions may take years to finish, but registries provide power in numbers. The Foundation will provide periodic updates and results with the discoveries made possible with this impactful data.

If you are a patient, or the caretaker of a patient living with GBS, CIDP or a variant of the condition please consider enrolling in this registry and helping to pave the way to better diagnosis, treatments, and Identifying mechanisms involved in the pathogenesis of this family disorders. Stay tuned for more information at gbs-cidp.org, or please call GBS|CIDP Foundation International at 610-667-0131.

GENERAL INFORMATION

Congratulations

My 26 years with GBS|CIDP Foundation International have been very rewarding and gratifying. A special thank you to our finance committee and past Treasurers Susan Keast, Ginger Crooks, and Jerry Jones for their leadership, guidance and support over the many years.

—Camille Yee


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866.820.IVIG (4844) | accredoivig.com

IN MEMORY OF HANK FRIEDMANOur first Treasurer and dear friend.

“From our family to you, our extended family — you inspire us and keep us all connected!” — Jim Crone, President of GBS|CIDP Foundation’s

Board of Directors


LOOKING BACK ON MY 28 YEARS OF HISTORY WITH THE GBS|CIDP FOUNDATION INTERNATIONAL...

• diagnosed with GBS in 1990• attending my first symposium in 1991 and becoming

liaison for The Netherlands• being appointed as Regional Director for the

international chapters/liaisons• joining the Board of Directors in 2005• attending every symposium since 1991• and today, attending the 15th symposium, I would like

to express my deepest gratitude to Estelle Benson for supporting me and my parents during my bout with GBS.

GIVING BACK BY SUPPORTING OTHER PATIENTS AND THEIR FAMILIES HAS BEEN THE MOST REWARDING AND GRATIFYING PART OF MY LIFE.

Patricia Blomkwist-MarkensVice President of International ActivitiesGBS|CIDP FOUNDATION INTERNATIONAL

In honor of my father, George Butler and nephew, Stuart Butler who both faced the

challenges of GBS. I am honored and humbled to

be a part of this remarkable community!

With gratitude,

Pam

26 GSB|CIDP Foundation International

WALK SCHEDULE2019 is looking to be another exciting and successful year of Walk & Rolls with five already scheduled:

The Clovis, California Walk & Roll will be held on March 9th, 2019 and chaired for a second time by Rob Vasquez and we are looking forward to another successful day.The Houston, Texas Walk & Roll will be held on March 30th, 2019. This will be the second annual Walk & Roll in Houston.The Charleston, South Carolina Walk & Roll will be held on April 13th, 2019. This will also be the second annual Walk & Roll in Charleston.The Washington, D.C. Walk & Roll will be held on April 27th, 2019 and chaired by Tonya Charleston. The Twin Cities, Minnesota Walk & Roll will be held on June 1st, 2019 and chaired for its second year by Megan Kaumpf.

REGIONAL CONFERENCESJoin us in 2019 for our one-day Regional Conferences! Thanks to their success in their inauguration in 2017 we have added four locations! Stay tuned for more information in the new year!

2019 Regional ConferencesMarch 9, 2019 Princeton, NJ

April 6, 2019 Colorado Springs, CO

September 7, 2019 Indianapolis, IN

October 5, 2019 Boston, MA

GENERAL INFORMATION

2020 16th International

Symposium October 1-3, 2020

Save the date! Join us at the closing

celebration on Saturday night for the big reveal

of the location!

?

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Cheers to 30 Years!Kroger Specialty Infusion is proud to be a sponsor of The GBS-CIDP Foundation Symposium

Kroger Specialty Infusion is a national specialized home infusion provider. Our unique integrated approach provides comprehensive home infusion services to our patients with an individual patient care plan to ensure that each patient achieves an optimal treatment outcome within a safe environment in their home. We offer:

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What a remarkable journey this has been! Thirty years ago, in Philadelphia, we had our first symposium. We had no idea what would happen! Almost 500 people showed up! Actually I’m delighted to report that some of those folks are right here today, at this meeting in San Diego. Being together, meeting others, meeting our brilliant doctors and sharing our stories is what the Symposium is all about. It has been my deep pleasure to have witnessed 15 of these over the past 30 years. And...they only get better! Thank you for joining us.

We will always be here for you.

Love, Estelle

GBS|CIDP FOUNDATION INTERNATIONAL International Office | 375 East Elm Street | Suite 101 | Conshohocken, PA 19428 | 866-224-3301 | www.gbs-cidpwalk.org

Thank you all so much for everything you do….this day and every day! Together, we have much to share and many to serve.

Gratefully, Lisa

thank youNO HARDER WORKING TEAM IN THE WORLD!

GBS|CIDP FOUNDATION INTERNATIONAL · A GBS chapter meeting is a very interesting experience. After...

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