Summer 2016

Working for a future when no one with Guillain-Barré th syndrome (GBS), chronic 14 International Symposium inflammatory demyelinating polyneuropathy (CIDP), Registration materials are enclosed for our and related syndromes such 14th INTERNATIONAL SYMPOSIUM as MMN suffers alone and that everyone has access to SEPTEMBER 22nd - 24th, 2016 the right diagnosis and the right treatment, right away. SAN ANTONIO, TEXAS

In This Issue Register Today! see page 8 Page 2 Welcome New Staff Members 3 From the Executive Director By Aledawi Figueroa meaning that no matter how hard you’re 4 Understanding a having it today, you can be sure that your Patient’s Experience with GBS My name is Aledawi Figueroa, but experience will help someone tomorrow. everybody calls me Widy. I am from Isabela, This is exactly what GBS confirmed in 5 Chapter Directory . I’m currently 34 years old. I am my life. In November 2013, my family and I 8 Symposium 2016 happily married with my husband, Obeth were living a dream come true. I was finally Registration! Soto. We have 2 children, Alanis Valeria, pregnant with my second baby, this time a 11 Advocacy Update, who is seven, and Obeth Julián, who is one baby boy. Alanis had asked for a brother ever Chapter Meetings, year old. I studied Business Administration, since she was able to talk and her prayers Walk and Roll majoring in Industrial Management and had finally been heard. We were all excited Human Resources. After I finished college I because the pregnancy was going perfect. We are pleased to announce continued studying Education, which is my In February 2014, 18 weeks into my our Perfect 100 Score via passion, concentrating in Special Education. pregnancy, my hands and feet started Charity Navigator! I love personalized instruction so I founded feeling numb and tingly. I texted my doctor The GBS|CIDP Foundation has earned Smile Again Learning Center Corporation in and she said it could be from water retention perfect scores for its Financial Health 2005. Here we offer tutoring, English and due to pregnancy. But a couple of days later and its Accountability & Transparency. Spanish courses, test prep reviews, among symptoms started getting worse, my tongue Those two scores then translate into started feeling tingly, as well, and I could no a perfect 100 point overall score. Less other services. I love spending time with longer walk on my own. That’s when I fell than one percent of the thousands of my family, reading and helping others. I’ve charities rated by Charity Navigator always worked with youth groups in church to the ground while taking some pre-baby have earned perfect scores! and together with my husband we give pictures with my family. http://www.charitynavigator.org/index. motivational talks to groups and couples. At this point my husband knew that it cfm?bay=search.summary&orgid=10284 My favorite quote is “what is darkness for wasn’t water retention and we called the you today can be light for others tomorrow”; continued on page 3 EXECUTIVE DIRECTOR Lisa Butler Please Welcome Our New Staff Members

FOUNDER Walk & Roll Coordinator Estelle L. Benson Jessica McManus started with the foundation in January 2016 as the Walk & Roll Coordinator. She has a BA in OFFICERS Santo Garcia Business Administration from the University of Hartford President and has worked for the past six years in marketing and K. Robert Doehrman events for the legal services industry. Jessica brings Vice President her experience in volunteer work and event management Patricia H. Blomkwist-Markens Vice President to her role and is excited to help bring the Walk and Roll Ginger Crooks program to life while raising awareness of GBS-CIDP. Treasurer She looks forward to connecting with patients and James Crone families affected with GBS and CIDP. Secretary As a Philadelphia native, Jessica enjoys spending time with her family and Philip H. Kinnicutt friends, and can most often be found staying active, practicing yoga, and baking. Past President

BOARD OF DIRECTORS Community Engagement Coordinator David R. Cornblath, MD Gil Marder came to the foundation in May 2016 where he Elizabeth B. Emerson Jeffrey Gerland, MD happily enjoys partnering with the foundation’s talented, Susan Keast dedicated volunteers to support the diverse GBS|CIDP Laura E. Stegossi, Esq. community. A nonprofit professional whose professional Joel S. Steinberg, MD, PhD Marilyn Tedesco experience includes significant volunteer, program and Kassandra Ulrich event management, Gil is committed to supporting and Russell Walter progressing the foundation’s critically important work Jim Yadlon to help people with GBS, CIDP or one of its variants. MEDICAL ADVISORY BOARD A Philadelphian and Temple University graduate with Richard J. Barohn, MD a BA in English, Gil’s passions include poetry, baseball, Vera Bril, MD David R. Cornblath, MD Roman history and a healthy lifestyle. His greatest pleasure is being with his Marinos C. Dalakas, MD wife, Joanne, daughter, Julia and two cats, Lightning and Mini Meow. Peter D. Donofrio, MD John D. England, MD Kenneth C. Gorson, MD Director of Development & Marketing Hans-Peter Hartung, MD Rick Yanchuleff began his career in consumer advertising Susan T. Iannaccone, MD Bart C. Jacobs, MD, PhD as a graphic designer/art director. After 15 years in Jonathan Katz, MD corporate medical marketing, he shifted his career into Carol Lee Koski, MD non-profit marketing and development serving the Richard A. Lewis, MD Robert Lisak, MD blind and vision impaired; marginalized Christians in Eduardo Nobile-Orazio, MD, PhD the Middle East and North Africa; women experiencing Gareth J. Parry, MD crisis-pregnancy; survivors of sex trafficking and sexual David S. Saperstein, MD Kazim A. Sheikh, MD exploitation; and presently, individuals suffering from rare Joel S. Steinberg, MD, PhD auto-immune deficiencies. Pieter A. van Doorn, MD Rick’s career history aligns with his personal goal of improving the quality of Professor Hugh J. Willison, MMBS, PhD, FRCP Gil I. Wolfe, MD, FAAN life for others. Nobuhiro Yuki, MD, PhD He holds a degree from Pennsylvania College of Art and Design, Lancaster, PA; a BA in communications from Lebanon Valley College, Annville, PA; and an Non-profit 501(c)(3) MA in advertising from Syracuse University, Syracuse, NY. Rick resides in Lancaster County, PA and enjoys spending time with his grandchildren, baseball, and driving his Miata on the weekends.

2 The Communicator | Summer 2016 GBS|CIDP Foundation International From the Executive Director

Dear Friends, Seeing is believing! Being Executive Director for the past few months has been quite an experience. I am overwhelmed with pride as I see the activity in the office as our staff (some of whom are featured in this issue) carry out our four pillars with a myriad of activities! Every day we can find meetings being planned, Walks being organized, reporters being informed, research grants being reviewed, and patient needs being answered just to name a few. The most touching was the response we received from total strangers inquiring about the Patient story from our last Communicator. There was an out-pouring of concern, offers to visit the patient and contact the family who was so moved by all of this. This is the essence of why we exist, and I can’t thank you enough! This also shows how carefully the newsletter is read by the thousands who receive it! And now, for the event of the year- our next symposium! I look I am overwhelmed with forward to seeing you September 22-24, 2016 in San Antonio, Texas. pride as I see the activity in Electronic registration is now open on our web site or you can also the office as our staff carry complete the form in this newsletter and mail it to us! The response out our four pillars with a to date is at an all-time high. We offer something for everyone- patients, caregivers, friends and medical professionals in addition myriad of activities! to the history and charm of San Antonio! Looking forward to meeting you personally in San Antonio, I am, as always, here for YOU!

ExecutiveLisa Butler Director

continued from page 1 Patient Story

doctor. She asked to see me the very next day and called in a neurologist and I was diagnosed with GBS. I got treated in the hospital with immunoglobulin and was transferred to a rehab center. I couldn’t be given any pain killers because I was pregnant, so I went through it all with the help of God, my family, my friends, prayers from many, many people, and my set goal to be able to walk when my baby was due in July 2014. After many therapies and exercises, most of them in a pool in order not to put pressure on the baby, I was able to walk and hold my baby when he was born. It was a tough journey but I’ve always felt that it was a blessing from God. I have faith that God has a purpose for everything and that everything happens for a reason. With this life-changing experience I have been able to help many people, some with GBS syndrome and others that are facing tough challenges in life, and I hope to be able to help many, many more.

GBS|CIDP Foundation International Summer 2016 | The Communicator 3 Research

Nurse Researcher, Dwayne Hooks, PhD, APRN, FNP-BC, NEW-BC, AAHIVS, FACHE, Has Interest In Better Understanding Patient’s Experience With Guillain-Barré Syndrome

revious research has revealed that nursing care The third theme concerned the knowledge level of has been inconsistent and that nurses do not have participants at the beginning of their illness and the desire Pan understanding of the special needs of the GBS that they had for additional information from caregivers patient. These issues lead to unnecessary stress and and other resources. Participants had no knowledge of the discomfort for patients and families. It is important that illness and utilized multiple methods to learn more about it nurses have the knowledge and resources necessary to after being diagnosed. Participants wanted members of the provide the highest level of care possible to GBS patients. healthcare team to have more knowledge about the illness A nursing researcher, Dr. Hooks, wanted to better when directing and providing care to individuals with GBS. understand the patient’s experience with moderate to The fourth theme revealed the importance of peer severe hospitalized Guillain-Barré syndrome patients contact. Participants commented on the value of being in order to frame potential recommendations for able to talk with an individual who had also been ill with improvement in nursing care guidelines, health policy, Guillain-Barré syndrome. This provided the participants with and education. Dr. Hooks’ qualitative study allowed him hope about recovery and the future. Participants described to interview fourteen individuals about their experience that information coming from an individual who had been with moderate to severe Guillain-Barré syndrome. These through the illness is preferred over information coming participants were from eight (8) states representing from healthcare team members who had not actually been primarily states located within the ill with Guillain-Barré syndrome. southeastern part of the United It is important that nurses The last theme that emerged from States. Seventy one point four the data was related to the general (71.4%) percent of the participants have the knowledge and care that was provided. This theme were female and 28.6% were resources necessary to revealed the impact that the lack of male. Ages of participants ranged provide the highest level of staff knowledge had on participants. from 19 to 79. All of the participants In addition, this theme presented were hospitalized anywhere from care possible to GBS patients information related to the concept 5 days to 405 days. of personalized patient centered The findings of the study revealed five (5) major themes. care and communication with caregivers. This theme First, participants described the manifestations of physical also illustrated the positive impact that accomplishing symptoms at the beginning of their illness, what they achievements has on participants. Dr. Dwayne Hooks will thought of these symptoms, and the subsequent progression be attending the Symposium in San Antonio this September of symptoms. Participants described the initial symptoms and will be able to share more about his findings. as “strange” or “odd” sensations or peculiar feelings. When These themes suggest that, generally speaking, participants initially started to experience symptoms, they healthcare team members, including nurses, do not tried to explain away the symptoms. Participants attempted have an understanding of the special needs of Guillain- to relate these symptoms to normal everyday activities Barré syndrome patients and that care is not consistent. and/or occurrences (such as a common illness, stress, or Additional work and research is needed to enhance overworking). Most participants described the pace and the patient’s experience with moderate to severe progression of symptoms ranging from very quick onset to Guillain-Barré syndrome. Implications are evident in the others who had a more prolonged onset. Pain and fatigue areas of practice, educational preparation of healthcare was also a major complication for participants. staff, health policy and future research. The second theme centered around the attitudes and If you have questions about this research, or if you emotions that participants experienced during their would like to participate in future studies about the care course of illness. This theme illustrated the wide range provided to GBS patients, please contact Dr. Dwayne Hooks of emotions that participants encountered; how having a at [email protected]. Future research will continue positive attitude impacted mental well-being and was a to focus on individuals who have recovered from GBS, as useful coping strategy, how independence was desired, and well as families and support systems, and professional and how participants experiencing significant levels of personal lay caregivers. A list of references for this article will be disability still had concern for their loved ones well-being. made available on request.

4 The Communicator | Summer 2016 GBS|CIDP Foundation International Chapter Directory

ALABAMA (NORTHERN) CONNECTICUT (HARTFORD) ILLINOIS () MISSOURI (KANSAS CITY) Kenneth (Bob) Doehrman Alberta Amaro Jennifer Flary Yvonne Bishop Huntsville, AL 35803 Windsor Lockes, CT 06096 Hainesville, IL 60030 Liberty, MO 64068 256-797-5097 860) 623-5893 (847) 490-2656 (816) 438-5584 [email protected] [email protected] [email protected] [email protected] ALABAMA (SOUTHERN) CONNECTICUT (SOUTHERN) INDIANA (INDIANAPOLIS) MONTANA Jo Ann Wettlaufer Sibylle DeRosa Jonathan Toumey Holly CannonHardin, MT 59034 Fairhope, AL 36532 New Canaan, CT 06840 Indianapolis, IN 46205 (406) 665-2962 cell (251) 928-8646 (317) 283-4056 (203) 966-0085 [email protected] [email protected] [email protected] [email protected] NEBRASKA (DESHLER) ARIZONA (PHOENIX) DELAWARE IOWA (DUBUQUE) Patricia Schardt Bridget Hamilton Bruce Throckmorton Joyce Gillespie (402) 365-7617 Dubuque, IA 52003 Phoenix, AZ 85007 Newark, DE 19702 (402) 200-8282 (cell) (623) 340-0079 (563) 556-3564 (302) 932-7422 [email protected] [email protected] [email protected] [email protected] KENTUCKY (EASTERN) NEVADA (RENO) ARIZONA (SOUTHERN) FLORIDA Rhonda Vega Lisa Arsaga Susan Kettel (BOCA RATON/DELRAY BEACH) Ashland, KY 41101 Gardnerville, NV 89410 Sahuarita, AZ 85629 Harriette Lion (606) 232-0239 (775) 783-9771 (520) 544-2229 (h) Delray Beach, FL 33446 (520) 850-2642 (c) [email protected] (561) 381-3452 [email protected] [email protected] NEVADA (CARSON CITY) [email protected] LOUISIANA (SHREVEPORT) Shane Sumlin Kyle Van Mouwerik ARKANSAS (FAYETTEVILLE) or Joyce Kennedy Nancy Brown Shreveport, LA South Lake Tahoe, CA 96150 Fayetteville, AR 72703 Boynton Beach, FL (318) 524-1158 (805) 801-6961 (479) 521-3898 (561) 740-2421 [email protected] [email protected] [email protected] [email protected] MARYLAND (WASH. D.C.) NEVADA (LAS VEGAS) Matt LaRocco CALIFORNIA (IRVINE) Barry Mattison FLORIDA (FT. MYERS) (202) 999-8328 Giulietta Perrotta Santo Garcia Las Vegas, NV Irvine, CA 92614 Fort Myers, FL 33919 [email protected] (702) 530-0900 (949) 331-3242 (239) 565-8300 MARYLAND (SOUTHERN) [email protected] Tonya ton [email protected] [email protected] NEW JERSEY (NORTHERN) Accokeek, MD 20607 CALIFORNIA (LOS ANGELES) Yessica Saez FLORIDA (MIAMI) (301) 283-6507 Alton R. C. Schmitt Farouk Gomati Elmwood Park, NJ 07407 [email protected] Woodland Hills, CA 91367 Miami, FL (551) 444-8545 (818) 340-8368 (617) 319-0688 MASSACHUSETTS (BOSTON) [email protected] Barbara Kuzmitski [email protected] [email protected] CALIFORNIA (SACRAMENTO) Ipswich, MA 01938 NEW JERSEY (NORTHERN) Gina Sharpley Rose C. Nagao FLORIDA (ORLANDO) (978) 356-3819 Egg Harbor Twp, NJ 08234 Sacramento, CA 95831 Janice Dunkerton [email protected] (916) 427-8669 Minneola, FL (609) 569-1756 (352) 978-6805 MASACHUSETTS (CENTRAL) [email protected] [email protected] Chris Kourlos [email protected] CALIFORNIA (SAN DIEGO) Ashland, MA NEW JERSEY (NORTHWEST) Sheila Blaine Lizz Russell-Parker FLORIDA (SARASOTA) (508) 380-8220 Long Valley, NJ 07853-3186 San Diego, CA 92102 Robert Bard [email protected] (619) 750-8778 Lakewood Ranch, FL (908) 432-9244 MICHIGAN (DETROIT) [email protected] (941) 388-8188 Chuck Schotten [email protected] [email protected] CALIFORNIA Livonia, MI 48150 NEW JERSEY (TRENTON) (SAN FRANCISCO BAY AREA) GEORGIA () (734) 261-2481 Jim Yadlon Russell M. Walter William Robbins [email protected] Hamilton Square, NJ 08690 San Francisco and North Bay (Marin, Atlanta, GA 30358 (609) 947-2697 cell MICHIGAN (DETROIT) Sonoma, Napa, Solano Counties) (404) 252-5377 Anjelica Carpenter [email protected] Sonoma, CA 95476 [email protected] Belleville, MI 48111 (707) 343-7133 NEW JERSEY (OAK RIDGE) (313) 989-5352 Kristina Orlandi (415) 235-9726 mobile HAWAII Sharon Klaschka [email protected] Oak Ridge, NJ 07438 [email protected] Wailuku, HI (973) 208-3322 or MINNESOTA (NORTHERN) (808) 878-1786 Merlaine Taylor Linda Greco [email protected] Grand Rapids, MN 55744 San Francisco and South Bay (San [email protected] (218) 326-8762 NEW MEXICO Mateo, Santa Clara, Santa Cruz, IDAHO (BOISE) Rose Gallegos Monterey Counties) James Mertz MINNESOTA (SOUTHERN) Espanola, NM 87533 South San Francisco, CA 94080 Caldwell, ID 83607 Gail Buckingham (505) 929-2815 (650) 219-1126 cell (208) 459-7141 Owatonna, MN 55060 [email protected] (650) 872-3348 (507) 456-4456 [email protected] NEW YORK (ALBANY) [email protected] [email protected] ILLINOIS (PEORIA) D. Alexander Holiday COLORADO (DENVER) Jim Crone MINNESOTA (TWIN CITIES) Albany, NY 12210 Evi Makovsky Peoria, IL 61604 Aaron Clarke 518-545-6965 (home) Denver, CO 80246 (309) 472-0191 cell Eagan, MN 55123 518-763-7080 (cell) (303) 898-8382 (612) 716-0174 (309) 677-3844 work [email protected] [email protected] [email protected] [email protected]

GBS|CIDP Foundation International Summer 2016 | The Communicator 5 Chapter Directory

NEW YORK (BROOKLYN) OHIO (CINCINNATI) PUERTO RICO TEXAS (SAN ANTONIO) Michael Ring Shawna Kellis Widy Figueroa Julie Bell Brooklyn, NY 11215 Cincinnati, OH 45245 Isabela, PR 00662 San Antonio, TX 78217 (347) 328-3713 (513) 233-1556 (787) 225-6332 (210) 885-0054 [email protected] [email protected] [email protected] [email protected] NEW YORK (BRONX/QUEENS) OHIO (COLUMBUS) SOUTH CAROLINA TEXAS (WACO) Beverly Baker William Ansley Jr. Merrilyn Macurak Diane Wilson Bronx, NY 10465 Columbus, OH 43235 Conway, SC 29527 West, TX 76691 (732) 597-1115 (614) 937-1251 (305) 753-8890 (254) 723-1356 [email protected] [email protected] (843) 397-8447 [email protected] NEW YORK (BUFFALO) [email protected] Sr. Eleanor O’Brien OHIO (SOUTHEAST) UTAH (SALT LAKE CITY) Buffalo, NY 14215 Sherry Price SOUTH CAROLINA Sheila Mota (716) 837-4932 Corning, Ohio 43730 (CHARLESTON) Salt Lake City, UT 740-605-4840 Mindy Hester (801) 918-2263 [email protected] [email protected] (864) 923-0725 [email protected] NEW YORK (NEWBURGH) [email protected] Bob Burton OHIO (WARREN) VERMONT (914) 805-3714 Margee and Tim McKenna SOUTH CAROLINA (GREENVILLE) Luey Clough [email protected] Warren, OH 44483 Pam Wrobel Ludlow, VT 05149 (330) 360-7419 Greenville, SC 29607 (802) 259-3491 NEW YORK (ROCHESTER) Noreen Reagan [email protected] (864) 423-3386 [email protected] Rochester, NY 14621 [email protected] [email protected] VIRGINIA (SOUTHWESTERN) (585) 469-0795 OKLAHOMA (TULSA) TENNESSEE (JACKSON) Rick Forney [email protected] Sue Gerkin Wenesday Ketron Hardy, VA 24101 NEW YORK (STATEN ISLAND) Tulsa, OK 74114 Jackson, TN (540) 330-4794 Raymond Lopez (918) 361-4079 (731) 267-8311 VIRGINIA (MANASSAS) Staten Island, NY 10307 [email protected] [email protected] Barbara Brandt (347) 200-4223 OREGON (PORTLAND) TENNESSEE (MEMPHIS) Manassas, VA 20112 [email protected] Matt LaRocco Brenda Hale (703) 220-2342 NEW YORK (SYRACUSE) Portland, OR 97201 Memphis, TN 38134 [email protected] Joan Armstrong (202) 999-8328 (901) 288-4164 Manlius, NY 13104 VIRGINIA (NORTHERN) [email protected] [email protected] (315) 391-6538 Brenda Crafton Herndon, VA 20171 [email protected] OREGON (PORTLAND) TEXAS (BROWNSVILLE) Dick Beukema Nancy Skidmore (703) 437-7134 NEW YORK (WESTCHESTER CO.) McMinnville, OR 97128 Brownsville, TX 78521 Steven Smith [email protected] (435) 658-5430 (956) 459-9289 New Rochelle, NY 10804 VIRGINIA (914) 310-0490 [email protected] [email protected] (STAUNTON/AUGUSTA COUNTY) [email protected] PENNSYLVANIA (ALTOONA) TEXAS (DALLAS) Wayne Bowyer Rena Jo Gossard Amy Rollason Staunton, VA NEW YORK (WESTCHESTER CO) Jon B. Schandler Altoona, PA 16602 Terrell, TX 75160 (540) 448-5767 Mount Kisco, NY (814) 232-5104 cell (214) 208-0246 [email protected] (914) 505-0002 [email protected] [email protected] WASHINGTON (TACOMA) [email protected] PENNSYLVANIA (PHILADELPHIA) TEXAS (FRISCO) PEDIATRIC Lee Ann Gooseman NORTH CAROLINA Barbara Anne Fowkes Renee Richmond Auburn, WA 98001 (WINSTON-SALEM) Doylestown, PA 18901 Frisco, TX 75035 (253) 833-0576 Jeanette Lawson (215) 348-7515 (214) 732-8542 [email protected] Winston-Salem, NC 27104 [email protected] [email protected] WEST VIRGINIA (336) 765-9498 or contact TEXAS (FORT WORTH) David Sullivan [email protected] The Foundation Office Valerie Keller Morgantown, WV 26508 NORTH CAROLINA (WESTERN) Narberth, PA 19072 Hurst, TX 76054 (304) 594-8041 – home Judi Jetson (610) 667-0131 (682) 552-1317 (304) 376-8041 - cell Weaverville, NC [email protected] (828) 407-0678 [email protected] [email protected] PENNSYLVANIA (PITTSBURGH) [email protected] TEXAS (HOUSTON) WISCONSIN (MADISON) Dan Budny Patsy Organ Emily Fruik OHIO (AKRON) Pittsburgh, PA 15201 Magnolia, TX 77354 Black Earth, WI 53515 Kassandra Ulrich 412-607-1684 (330) 724-2608 (281) 356-7960 (708) 710-7334 cell [email protected] Akron, OH 44301 [email protected] [email protected] [email protected]

6 The Communicator | Summer 2016 GBS|CIDP Foundation International Chapter Directory

International Contacts CANADA JAPAN POLAND Donna Hartlen CIDP SUPPORT GROUP Joanna Opiat-Bojarska ARGENTINA Executive Director Taisho University, Aoki Laboratory Borówiec Lic. Ernesto C. Galeano GBS|CIDP Foundation of Canada Tokyo 0607393509 cell Buenos Aires 1 (647) 560-6842 Tel: 81-3-5962-7700 Japanese and [email protected] 011-54114-862-0782 recording message only gbs-cidp.org/canada ROMANIA [email protected] [email protected] Fax: 050-2200-5803 Darius Filip AUSTRALIA (NSW) CHINA [email protected] Jud Satu Mare Christine Simpson-Morgan Lu Kai www.cidp-sgj.org Japanese only 0040758608224 Epping, NSW Nanjing P.R. KENYA [email protected] 61-2-9617 0883 +86 13645176633 Karani Kinyua SOUTH AFRICA (GAUTENG) www.gbs-cidp-nsw.org.au [email protected] Nairobi Bob Oakes [email protected] CHINA Tel 0720-560078, 0733-532647, 020- Farrarmere, Benoni AUSTRALIA (NSW) Vincent Yao 2091405 011 849 6349 home 083 450 2026 cell Toni Louise Louttit Tian Jin City [email protected] [email protected] Cootamundra, NSW -086 13512244553 cell or 0422 826 421 SOUTH AFRICA (EASTERN CAPE) [email protected] Catherine Wanjiku Kiarie Evan Rothman [email protected] Kiambu Uitenhage, Eastern Cape COLOMBIA +254-721-291-858 AUSTRALIA (S.A.) Diana J. Gutierrez Ahumada 27 41 9661845 Beth Morgan Bogota [email protected] [email protected] Tea Tree Gully, 5091 2602010 home 3132708263 cell 08 8264 1988 KUWAIT SOUTH AFRICA (EASTERN CAPE) [email protected] Hala Ahmed Mia van Daalen [email protected] CYPRUS Ahmadi, Kuwait Jeffreysbay, Eastern Cape +965 97941410 AUSTRALIA (QUEENSLAND) Dr. Kleopas A. Kleopa (+27) 0826553570 Lara-Jade David The Cyprus Institute of [email protected] [email protected] Cairns, Queensland 4870 Neurology and Genetics LICHTENSTEIN (See Germany) SOUTH AFRICA (WESTERN CAPE) +61 406 432 372 Nicosia Albert Handelmann Marion Oosthuysen [email protected] (+357)-22358600 Sunningdale, Capetown [email protected] MALAYSIA 27 21 556 5157 AUSTRALIA (VICTORIA) Khaizan Sharized Kath Donaldson EGYPT (See Kuwait) [email protected] Hala Ahmed Selangor Darul Ehsan Victoria 3023 +6012-9069658 SOUTH AMERICA 0011 6139 361 1190 ETHIOPIA [email protected] Santo Garcia [email protected] Tedla Mekonnen Gebretsadik Florida Addis Ababa MALTA 239-565-8300 AUSTRALIA (TASMANIA) Trevor Sammut John Stanley 251 11 663 5178 [email protected] 251 91 123 0658 cell Birikirkara Devonport, Tasmania +356 79302328 SPAIN (BARCELONA) 0419-328-665 [email protected] [email protected] Juan Antonio Lopez Valverde [email protected] FRANCE (NANTES) Els Pallaresos Jean-Philippe Plançon MEXICO 606-83.93.96 AUSTRALIA (VICTORIA) Valentina Treviño La Baule-Escoublac [email protected] Melva Behr 0033-(0)-652462492 Chihuahua, Chihuahua Beaconsfield, Victoria 614 394 3157 SPAIN (MADRID) +03 9707 3278 [email protected] [email protected] Alejandra Pérez del Real http://www.ingroup.org.au/ GERMANY or Madrid Albert Handelmann 69372220 [email protected] Monchengladbach Armando Pereda [email protected] +49(0) 2161-480499 Mexico Distrito Federal C.P. 15900 [email protected] 521 (55) 35147740 AUSTRALIA (WESTERN) +49(0) 170-8892021 SWEDEN Jeff Ibbotson [email protected] [email protected] Claus Zimmermann Pedersen Perth, Western Australia Hästveda GERMANY (SOUTH) NEPAL (+61) 0417 174 263 Eva Fels Nasim Ansari +46 70 994 4207 [email protected] Boos Kathmandu [email protected] +977 –(1) 44-690 20 main AUSTRIA (See Germany) 08335/8663 gbssverige.com 980 20 33303 cell Albert Handelmann [email protected] SWITZERLAND (See Germany) [email protected] Albert Handelmann BELGIUM (BRUSSELS) GERMANY (SOUTH) Thierry Brouwer Doris Krönert [email protected] www.gbs-cidp-nepal.org TURKEY Brussels Fuerth Dr. (Ms) Can Ebru Kurt 322-241-7011 0911/ 76 48 45 NETHERLANDS 90 533 2249252 [email protected] [email protected] Patricia H. Blomkwist-Markens Amsterdam [email protected] HONDURAS (TEGUCIGALPA) BELGIUM (NORTH) Dr. Sara Alicia Ordóñez Fiallos 011-31-20-6440453 TURKEY Bet Geukens 011-31-6 44 988 492 cell Sait Mentes Birlik Aalst [email protected] (504) 9858-8708 [email protected] 90.533.0903263 32-53/704-159 [email protected] [email protected] HUNGARY NEW ZEALAND (NELSON) or Adrienn Cilárik Tony Pearson UK AND IRELAND Filip Rabaut Szentendre Upper Moutere, Nelson 7175 Gill Ellis Harelbeke +36202189474 + 64 3 526 6076 Support Officer Guillain-Barre & Associated Inflammatory 0474 634 160 [email protected] [email protected] www.gbsnz.org.nz Neuropathies [email protected] INDIA T: +44 1529 469910 F: +44 1529 469915 Dr. Arindam Anneshan BOLIVIA NEW ZEALAND (WELLINGTON) 24hr helpline UK - 0800 374803 Ingrid Penarrieta Kolkata,West Bengal Bob Stothart or Ireland 1800 806152 +9194330 14707 Wellington La Paz [email protected] (591) 2721540 home [email protected] 04-3850240 President Emeritus: Glennys Sanders MBE (591) 70592902 cell INDIA [email protected] [email protected] Ramgopal Vallath www.gbsnz.org.nz VENEZUELA Bangalore Armando J. Salas Nava BOSNIA AND HERZEGOVINA +91 9980307777 NIGERIA Maracaibo Izet Cišic Sosanya Babafemi Adeoluwa 58-261-7577340 [email protected] Kaduna Zenica [email protected] 00387 62 632 920 IRELAND (See UK) +23480-53497498 +23480-39140470 [email protected] ISRAEL [email protected] WEST INDIES (TRINIDAD/TOBAGO) Chen nberg Christine Bunting BRAZIL Jerusalem PAKISTAN Arima Marcio Pocciotti Khalid Mehmood Zia (868) 667-1592 052-5015524 Pakistan Myasthenic Welfare Organization Jundiaí, São Paulo [email protected] +55 11 98224 5969 [email protected] Islamabad [email protected] ITALY (NORTH) +0092512262830 WEST INDIES (TRINIDAD) Giovanni Giavelli [email protected] Nick & Nicole Galt BRAZIL Reggio Emilia www.pmwo.org.uk Westmoorings on the Sea Gonzalo Pozo 0522-541443 (868) 633-4069 São Paulo 327 4449596 cell PERU (See Brazil) [email protected] +55 11 95107 0414 Gonzalo Pozo [email protected] [email protected] [email protected] PHILIPPINES ITALY (SOUTH) Catherine Quiambao ZIMBABWE BRAZIL Salvatore Iannotti, MD Chengetai Chinguwa Camila Pomar Gargalaca Benevento Las Pinas, Metro Manila Harare São Paulo 39 0824.977451 +639178072981 +263-775-552-710 +55 11 981282555 [email protected] [email protected] [email protected] [email protected] CIDP Group in Italy www.gbs-cidp-ph.org GBS|CIDP Foundation International www.cidp.it Summer 2016 | The Communicator 7 14 th International Symposium SEPTEMBER 22ND – 24TH 2016 - SAN ANTONIO, TEXAS

Have you registered for our 2016 Symposium yet??

You can register via our website, by mail (please tear out next page, complete both sides and mail), or by phone (call Kelly McCoy at 610-667-0131).

We have a jam-packed weekend planned for you! We are extremely excited to bring our members an all new curriculum for 2016, focusing on “Life a er Diagnosis.” We have already added some NEW sessions since we inially announced our curriculum in April, and we have some excing news!

Introducing: One on Ones with our Global Medical Advisory Boar d!

Space is limited. We will be offering the opportunity for a group of our members to meet individually face to face with our world- renowned physicians for a private dialogue. Register now to be in the running for this amazing opportunity!

You MUST register for the symposium to qualify & members will be selected at random closer to the even t date. If you have already registered please email [email protected] with your interest in this new feature.

Our event will be held at the Hya Regency San Antonio, located directly on the beauful & historic Riverwalk.

123 Losoya Street, San Antonio, Texas, USA, 78205

❖ 16 Story Garden Atrium Hotel ❖ 8 Miles from San Antonio Internaonal Airport ❖ Across from the Historic Alamo ❖ Shops at Paseo del Alamo located within Hote l ❖ All Event space an easy elevator ride from your sleeping room ❖ Special rate for event $155/night plus taxes & fees ❖ $32 Round Trip shule to airport available through hotel(G O Shule) Call today to reserve your room (hotel accommodaons not included in conference registraon cost) (210)222-1234 (you must menon GBS|CIDP for group rate)

Don’t miss out on the local aracons! Visit the historic Alamo, enjoy an evening out on the Riverwalk, sight see the vibrant architecture of the city & much more!

Complete the next two pages to register now! See you in San Antonio!!

8 The Communicator | Summer 2016 GBS|CIDP Foundation International 3:45-4:35 – GBS Protocols Instructor: Dr. Bart Jacobs CONCURRENT SESSIONS: Thursday September 22nd 2016 4:45-5:45 – ASK THE EXPERTS – GBS Presenters: Dr. Bart Jacobs, Dr. Ken Gorson & Dr. John 12pm – 5pm – Lobby Registraon England (Moderated by Dr. Carol Lee Koski) 5pm-7pm – Western Welcome Reception 4:45-5:45 – ASK THE EXPERTS – CIDP & MMN Friday September 23rd 2016 Presenters: Dr. David Cornblath, Dr. Kazim Sheikh & Dr. Richard Lewis (Moderated by: Santo Garcia) 7:00 – Registraon Resumes in Foyer Members break for evening - Dinner on own 7:00 – 8:00 – Connental Breakfast 7:00-9:00 – Meet & Greet & Sweets 8:15-8:30 – Morning Meditation Instructor: Pam Butler Saturday September 24th 2016 8:40-8:55 – Welcome Introduction Presenter: Lisa Butler & Santo Garcia 7:00 – Registraon Resumes in Foyer 9:00-9:30 – Keynote Speech – Current Foundation Topics 7:00 – 8:00am – Connental Breakfast Presenter: Dr. Ken Gorson & Dr. Bart Jacobs 8:00-8:15 – Morning Meditation 9:40-10:40 – Managing Pain Instructor – Pam Butler Presenter: Dr. Alejandro Tobon 8:15-8:45 – Kickoff Speech – Zika Virus  COFFEE BREAK Presenter: NIH CONCURRENT SESSIONS: (Please Select One) 8:50-9:40 – The Power of Mindfulness 11:00-12:00 – Managing GBS Residuals Presenter: Penny O’Brien, MS Presenter: Dr. Richard Lewis  9:30-11:00 - Global Medical Advisory Board – One on Ones 11:00-12:00 – Teen Session – Living with CIDP  COFFEE BREAK Presenter: Dr. Diana Castro CONCURRENT SESSIONS: 11:00-12:00 – Vaccinations 10:00- 10:50– Fitness – Getting Moving Again Presenter: Dr. John England 10:00- 10:50 – Patient Financial Assistance Panel  12:00-1:15 – LUNCH  11:00-11:30 – Meet Fellow Patients! Oponal Sessions  11:30-12:45 – LUNCH Yoga Session with Kristen Weaver/Sterling Yoga Oponal Sessions Hugh Williams – Fi y Two Fives ‘Why I Ran’ Yoga Session with Kristen Weaver/Sterling Yoga Post Lunch Teen Acvity – Visit to the Alamo Post Lunch Teen Acvity – Visit to the Riverwalk CONCURRENT SESSIONS: 12:55-1:20- Afternoon Chair Aerobics 1:20-2:00 – Current Research - GBS Presenter: Santo Garcia Presenter: Dr. Ken Gorson CONCURRENT SESSIONS: 1:20-2:00 – Current Research – CIDP 1:30-2:20- Alternative Therapies Presenter: Dr. David Cornblath Presenter: Dr. Terry Harville 1:20-2:00 – Current Research – MMN 1:30-2:20 – Be Your Own Advocate Panel Presenter: Dr. Richard Lewis Presenter: Jim Crone, Dr. Joel Steinberg & Estelle Benson CONCURRENT SESSIONS:  1:30-3:00 - Global Medical Advisory Board – One on Ones 2:10-3:00 – CIDP - "Stem Cell Transplantation: Treatment for CONCURRENT SESSIONS: CIDP by Rebooting the Immune System" 2:30-3:20 – Emotional Issues - Patients Presenters: Dr. Richard Burt 2:30-3:20 – Emotional Issues - Caregivers 2:10-3:00 – Adaptive Equipment Presenter: Lynn Kunauer, Ph.D. Presenter: To be determined 3:30-4:20 – Foot Care 101 2:10-3:00 – GBS Modified Therapies Research - Annexon Presenter: Dr. Jeffrey Gerland Presenter: Mario Saltarelli, MD, PhD, Chief Medical Officer CONCURRENT SESSIONS: 3:10-3:35- Kickoff Chair Aerobics 4:30-5:30 – ASK THE EXPERTS – GBS Presenter: Santo Garcia Dr. Bart Jacobs, Dr. Ken Gorson & Dr. John England CONCURRENT SESSIONS: (Moderated by Estelle Benson) 3:45-4:35 – Sexual Health (Men) 4:30-5:30 – ASK THE EXPERTS – CIDP & MMN Presenter: Dr. Joel Steinberg & Santo Garcia Presenters: Dr. David Cornblath, Dr. Kazim Sheikh & Dr. 3:45-4:35 – Sexual Health (Women) Richard Lewis (Moderated by: Dr. Carol Lee Koski) 3:45-4:35 – CIDP – Beyond IVIG & Steroids, Stem Cell 6:30pm-9:30pm – Closing Celebration Fiesta Research, & More. Presenters: Dr. David Cornblath, Dr. Ken Gorson

GBS|CIDP Foundation International Summer 2016 | The Communicator 9 Registraon Page #2 Registration Information Registration fee does not include travel or hotel accommodations. All on-site registrations will be subject to a $25 fee. Registraon can be completed via our online form (hps://www.gbs-cidp.org/symposium/symposium-registraon/) or please complete all informaon below & return to:

GBS|CIDP Foundaon Internaonal C/O Symposium 104 ½ Forrest Avenue Narberth, PA 19072

(Please Circle Selecon) ✓ Full Conference – Price: $150.00 Covers all sessions, workshops, conference materials, box lunches, snacks, Thursday night Welcome Recepon and Saturday evening recepon. Does not include Friday dinner but we will have dessert at the hotel . ✓ Friday Aendee – Price: $50.00 includes all sessions, connental breakfast and boxed lunch. Does not include dinner Friday . ✓ Saturday Aendee – Price: $75.00 Includes all sessions, connental breakfast, boxed lunch and Saturday night closing celebraon . ✓ Industry (Non Sponsor) $400 – Full Conference ✓ Teenager Full Conference (13-17 Years old) $50 ✓ Child Full Conference (up to 12 years old) $0

First Name: ______MMNMMN PatientPaent MillerMiller Fisher PaPatientent Last Name: ______ Teen TeenChild (up to 12 years) Street Address: ______ Family/Friend Child (up to 12 years) Address Line 2: ______ Liaison Family/FriendSponsor City: ______(______) LiaisonMedical Professional (______) State / Province / Region: ______Sponsor Other (______) ZIP / Postal Code: ______(______) Medical Professional Phone: ______(______)

Email Address: ______Other

(______) Credit Card Number: ______

Expiraon: ______Security Code (CVV): ______

To pay by check: Please make checks payable to GBS|CIDP Foundaon Internaonal and return with registraon informaon.

Affiliation: GBS Paen t CIDP Paent

To complete informaon for more than one registrant please submit a separate sheet of paper. All parcipants must register separately.

For quesons or to register via the tel ephone please call 610-667-0131 or email [email protected]

Please check if you are local and interested in volunteering opportunies at our event !

10 The Communicator | Summer 2016 GBS|CIDP Foundation International Advocacy Update In February, Dr. Koroshetz and other leaders from NINDS met with Lisa Butler, Executive Director, and Dr. David Cornblath, Board member of the Foundation and Medical Advisory Board, of GBS|CIDP Foundation International in January and spoke about different opportunities for research and collaboration between the Foundation and NINDS. During the meeting, a State of the Science Conference was discussed and also there was concern about how to encourage younger investigators to apply for grants. In April, Dr. Anthony Fauci and leaders from NIAID met with Lisa Butler, and Dr. Ken Gorson, Member, Global Medical Advisory Board, GBS|CIDP Foundation International in April to discuss the Zika Virus and how the Foundation and the Dr. Ken Gorson, Chair of agency can work together. Dr. Fauci spoke about the agency’s response to Zika Global Medical Advisory Board, and the need for robust funding to help combat the spread of the virus. Dr. Fauci Dr. Anthony Fauci, Director of National Institute of Allergy and also discussed in detail possibilities to work with NINDS and NIAID to expand Infectious Disease, the research and understanding of the link between Zika and GBS. Lisa Butler, Executive Director

Chapter Meetings Those looking to meet people with shared experiences who care have had plenty of opportunities in 2016 to attend a chapter meeting, grow their support network and learn about GBS, CIDP and its variants from experts in a range of fields. While everyone’s personal situation is different, many share similar questions, concerns and desire to gain understanding and make sense of the often overwhelming challenges they face. GBS|CIDP chapter meetings have offered just such a supportive, learning New Jersey chapter meeting environment for thousands of patients, families and caregivers at more than 50 chapter meetings held so far in 2016 in the alone! Organized by dedicated GBS|CIDP Chapter Liaisons, who volunteer their own time to help people in their community, chapter meetings offer a welcoming place for patients, family members, caregivers, and others to make new friends, see old friends, share information and support each other. If you would like to meet people in your area who care, learn more about your condition and gain access to valuable resources we can help! Be sure to check our community events calendar at https://www.gbs-cidp.org/take-action/ events/ to see a full list of upcoming events or contact [email protected] Southern Maryland, Virginia, and for information about chapter meetings in your area. Washington DC multi-chapter meeting

Spring Update “Old Friends Meeting For the First Time...” The spring Walk & Roll season was a huge success with over $100,000 raised and over 500 patients, caregivers, friends and family in attendance. With each walk we are closer to helping to achieve our vision that every person who has been affected by GBS, CIDP, MMN or their variants has convenient access to early and accurate diagnosis, affordable treatments & dependable support services. These Walks would not be possible without the enormous support of our Volunteer Chairs and their teams. We cannot thank them enough for their dedication & support. PLEASE CONSIDER JOINING US FOR AN UPCOMING WALK! New Jersey: Basking Ridge ~ 6/12/2016 Washington, DC ~ 10/8/2016 California: San Francisco ~ TBD S. Carolina: Myrtle Beach ~ 9/10/2016 Illinois: Indianapolis ~ 10/8/2016 Georgia: Atlanta ~ TBD Pennsylvania: Pittsburgh ~ 9/17/2016 Texas: Houston ~ 10/22/2016 Ohio: Columbus ~ TBD New York: Staten Island ~ 9/17/2016 Florida: Del Ray ~ 10/29/2016 Pennsylvania: Philadelphia ~ TBD Illinois: Chicago ~ 9/18/2016 Florida: Fort Meyers ~ 11/19/2016 Utah: Salt Lake City ~ TBD Massachusetts: Boston ~ 10/1/2016 California: Chico ~ TBD Washington: Seattle ~ TBD GBS|CIDP Foundation International Summer 2016 | The Communicator 11 Diagnosed with MMN? Teenagers with GBS and CIDP Advocacy Contact: Dominick Spatafora We are launching a new online If you are interested in advocacy [email protected] support forum for teens ages 12 to 18 activities on a federal, state, to connect with one another, share or local level contact the Miller Fisher Variant Group stories, and support each other. Foundation office to sign up! Please call the National Office for This group is also open to teenage contact with others. children of patients. Contact the office Be sure to inform the International to find out how to join! Office if you have been diagnosed Children with GBS with one of the following. This Lisa Butler, 610-667-0131 National Office: 610-667-0131 will add you to condition-specific GBS|CIDP Foundation International communication. Email: [email protected] Pregnant Women with GBS AMAN Son, Stuart had GBS at 5 1/2 years old Robin Busch, 203-972-2744 AMSAN 264 Oenoke Ridge Anti-MAG Children with CIDP New Canaan, CT 06840 Campylobacter For children diagnosed with CIDP Robin has offered to share her contact Holly Cannon whose daughter experience with GBS which came GBS X2 Hailey has CIDP. about during her pregnancy. We have Miller Fisher [email protected] many such cases and reassurance MMN from someone who has gone through Looking for a 20-Something Contact? this is needed support. Contact: Kyle Van Mouwerik [email protected]