14thInternational Symposium

Summer 2016
Working for a future when
no one with Guillain-Barré
syndrome (GBS), chronic
inflammatory demyelinating
polyneuropathy (CIDP),
and related syndromes such
as MMN suffers alone and
that everyone has access to
the right diagnosis and the
right treatment, right away.
In This Issue
Page
14 th International Symposium
Registration materials are enclosed for our
14th INTERNATIONAL SYMPOSIUM
SEPTEMBER 22nd - 24th, 2016
SAN ANTONIO, TEXAS
Register Today!
see page 8
2 Welcome New
Staff Members
3From the Executive
Director
4Understanding a
Patient’s Experience
with GBS
By Aledawi Figueroa
My name is Aledawi Figueroa, but
everybody calls me Widy. I am from Isabela,
5Chapter Directory
Puerto Rico. I’m currently 34 years old. I am
8Symposium 2016
happily married with my husband, Obeth
Registration!
Soto. We have 2 children, Alanis Valeria,
11Advocacy Update, who is seven, and Obeth Julián, who is one
Chapter Meetings,
year old. I studied Business Administration,
Walk and Roll
majoring in Industrial Management and
Human Resources. After I finished college I
We are pleased to announce
continued studying Education, which is my
our Perfect 100 Score via
passion, concentrating in Special Education.
Charity Navigator!
I love personalized instruction so I founded
The GBS|CIDP Foundation has earned Smile Again Learning Center Corporation in
perfect scores for its Financial Health 2005. Here we offer tutoring, English and
and its Accountability & Transparency.
Spanish courses, test prep reviews, among
Those two scores then translate into
a perfect 100 point overall score. Less other services. I love spending time with
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
and together with my husband we give
have earned perfect scores!
http://www.charitynavigator.org/index. motivational talks to groups and couples.
cfm?bay=search.summary&orgid=10284 My favorite quote is “what is darkness for
you today can be light for others tomorrow”;
meaning that no matter how hard you’re
having it today, you can be sure that your
experience will help someone tomorrow.
This is exactly what GBS confirmed in
my life. In November 2013, my family and I
were living a dream come true. I was finally
pregnant with my second baby, this time a
baby boy. Alanis had asked for a brother ever
since she was able to talk and her prayers
had finally been heard. We were all excited
because the pregnancy was going perfect.
In February 2014, 18 weeks into my
pregnancy, my hands and feet started
feeling numb and tingly. I texted my doctor
and she said it could be from water retention
due to pregnancy. But a couple of days later
symptoms started getting worse, my tongue
started feeling tingly, as well, and I could no
longer walk on my own. That’s when I fell
to the ground while taking some pre-baby
pictures with my family.
At this point my husband knew that it
wasn’t water retention and we called the
continued on page 3
EXECUTIVE DIRECTOR
Lisa Butler
Walk & Roll Coordinator
FOUNDER
Estelle L. Benson
OFFICERS
Santo Garcia
President
K. Robert Doehrman
Vice President
Patricia H. Blomkwist-Markens
Vice President
Ginger Crooks
Treasurer
James Crone
Secretary
Philip H. Kinnicutt
Past President
BOARD OF DIRECTORS
David R. Cornblath, MD
Elizabeth B. Emerson
Jeffrey Gerland, MD
Susan Keast
Laura E. Stegossi, Esq.
Joel S. Steinberg, MD, PhD
Marilyn Tedesco
Kassandra Ulrich
Russell Walter
Jim Yadlon
MEDICAL ADVISORY BOARD
Richard J. Barohn, MD
Vera Bril, MD
David R. Cornblath, MD
Marinos C. Dalakas, MD
Peter D. Donofrio, MD
John D. England, MD
Kenneth C. Gorson, MD
Hans-Peter Hartung, MD
Susan T. Iannaccone, MD
Bart C. Jacobs, MD, PhD
Jonathan Katz, MD
Carol Lee Koski, MD
Richard A. Lewis, MD
Robert Lisak, MD
Eduardo Nobile-Orazio, MD, PhD
Gareth J. Parry, MD
David S. Saperstein, MD
Kazim A. Sheikh, MD
Joel S. Steinberg, MD, PhD
Pieter A. van Doorn, MD
Professor Hugh J. Willison, MMBS, PhD, FRCP
Gil I. Wolfe, MD, FAAN
Nobuhiro Yuki, MD, PhD
Non-profit 501(c)(3)
2
Please Welcome Our New Staff Members
Jessica McManus started with the foundation in January
2016 as the Walk & Roll Coordinator. She has a BA in
Business Administration from the University of Hartford
and has worked for the past six years in marketing and
events for the legal services industry. Jessica brings
her experience in volunteer work and event management
to her role and is excited to help bring the Walk and Roll
program to life while raising awareness of GBS-CIDP.
She looks forward to connecting with patients and
families affected with GBS and CIDP.
As a Philadelphia native, Jessica enjoys spending time with her family and
friends, and can most often be found staying active, practicing yoga, and baking.
Community Engagement Coordinator
Gil Marder came to the foundation in May 2016 where he
happily enjoys partnering with the foundation’s talented,
dedicated volunteers to support the diverse GBS|CIDP
community. A nonprofit professional whose professional
experience includes significant volunteer, program and
event management, Gil is committed to supporting and
progressing the foundation’s critically important work
to help people with GBS, CIDP or one of its variants.
A Philadelphian and Temple University graduate with
a BA in English, Gil’s passions include poetry, baseball,
Roman history and a healthy lifestyle. His greatest pleasure is being with his
wife, Joanne, daughter, Julia and two cats, Lightning and Mini Meow.
Director of Development & Marketing
Rick Yanchuleff began his career in consumer advertising
as a graphic designer/art director. After 15 years in
corporate medical marketing, he shifted his career into
non-profit marketing and development serving the
blind and vision impaired; marginalized Christians in
the Middle East and North Africa; women experiencing
crisis-pregnancy; survivors of sex trafficking and sexual
exploitation; and presently, individuals suffering from rare
auto-immune deficiencies.
Rick’s career history aligns with his personal goal of improving the quality of
life for others.
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
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.
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
forward to seeing you September 22-24, 2016 in San Antonio, Texas.
Electronic registration is now open on our web site or you can also
complete the form in this newsletter and mail it to us! The response
to date is at an all-time high. We offer something for everyonepatients, caregivers, friends and medical professionals in addition
to the history and charm of San Antonio!
I am overwhelmed with
pride as I see the activity in
the office as our staff carry
out our four pillars with a
myriad of activities!
Looking forward to meeting you personally in San Antonio, I am, as always, here for YOU!
Lisa Butler
Executive 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
P
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
an 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
The last theme that emerged from
It is important that nurses
States. Seventy one point four
the data was related to the general
have the knowledge and
(71.4%) percent of the participants
care that was provided. This theme
were female and 28.6% were
revealed the impact that the lack of
resources necessary to
male. Ages of participants ranged
staff knowledge had on participants.
provide the highest level of
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 Guillainto 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)
Kenneth (Bob) Doehrman
Huntsville, AL 35803
256-797-5097
[email protected]
ALABAMA (SOUTHERN)
Jo Ann Wettlaufer
Fairhope, AL 36532
(251) 928-8646
[email protected]
ARIZONA (PHOENIX)
Bruce Throckmorton
Phoenix, AZ 85007
(623) 340-0079
[email protected]
ARIZONA (SOUTHERN)
Lisa Arsaga
Sahuarita, AZ 85629
(520) 544-2229 (h)
(520) 850-2642 (c)
[email protected]
ARKANSAS (FAYETTEVILLE)
Joyce Kennedy
Fayetteville, AR 72703
(479) 521-3898
[email protected]
CALIFORNIA (IRVINE)
Giulietta Perrotta
Irvine, CA 92614
(949) 331-3242
[email protected]
CALIFORNIA (LOS ANGELES)
Alton R. C. Schmitt
Woodland Hills, CA 91367
(818) 340-8368
[email protected]
CALIFORNIA (SACRAMENTO)
Rose C. Nagao
Sacramento, CA 95831
(916) 427-8669
[email protected]
CALIFORNIA (SAN DIEGO)
Lizz Russell-Parker
San Diego, CA 92102
(619) 750-8778
[email protected]
CALIFORNIA
(SAN FRANCISCO BAY AREA)
Russell M. Walter
San Francisco and North Bay (Marin,
Sonoma, Napa, Solano Counties)
Sonoma, CA 95476
(707) 343-7133
(415) 235-9726 mobile
[email protected]
or
Linda Greco
San Francisco and South Bay (San
Mateo, Santa Clara, Santa Cruz,
Monterey Counties)
South San Francisco, CA 94080
(650) 219-1126 cell
(650) 872-3348
[email protected]
COLORADO (DENVER)
Evi Makovsky
Denver, CO 80246
(303) 898-8382
[email protected]
GBS|CIDP Foundation International
CONNECTICUT (HARTFORD)
Alberta Amaro
Windsor Lockes, CT 06096
860) 623-5893
[email protected]
CONNECTICUT (SOUTHERN)
Sibylle DeRosa
New Canaan, CT 06840
(203) 966-0085
[email protected]
DELAWARE
Joyce Gillespie
Newark, DE 19702
(302) 932-7422
[email protected]
FLORIDA
(BOCA RATON/DELRAY BEACH)
Harriette Lion
Delray Beach, FL 33446
(561) 381-3452
[email protected]
or
Nancy Brown
Boynton Beach, FL
(561) 740-2421
[email protected]
FLORIDA (FT. MYERS)
Santo Garcia
Fort Myers, FL 33919
(239) 565-8300
[email protected]
FLORIDA (MIAMI)
Farouk Gomati
Miami, FL
(617) 319-0688
[email protected]
FLORIDA (ORLANDO)
Janice Dunkerton
Minneola, FL
(352) 978-6805
[email protected]
FLORIDA (SARASOTA)
Robert Bard
Lakewood Ranch, FL
(941) 388-8188
[email protected]
GEORGIA (ATLANTA)
William Robbins
Atlanta, GA 30358
(404) 252-5377
[email protected]
HAWAII
Sharon Klaschka
Wailuku, HI
(808) 878-1786
[email protected]
IDAHO (BOISE)
James Mertz
Caldwell, ID 83607
(208) 459-7141
[email protected]
ILLINOIS (PEORIA)
Jim Crone
Peoria, IL 61604
(309) 472-0191 cell
(309) 677-3844 work
[email protected]
ILLINOIS (CHICAGO)
Jennifer Flary
Hainesville, IL 60030
(847) 490-2656
[email protected]
INDIANA (INDIANAPOLIS)
Jonathan Toumey
Indianapolis, IN 46205
(317) 283-4056
[email protected]
IOWA (DUBUQUE)
Bridget Hamilton
Dubuque, IA 52003
(563) 556-3564
[email protected]
KENTUCKY (EASTERN)
Susan Kettel
Ashland, KY 41101
(606) 232-0239
[email protected]
MISSOURI (KANSAS CITY)
Yvonne Bishop
Liberty, MO 64068
(816) 438-5584
[email protected]
MONTANA
Holly CannonHardin, MT 59034
(406) 665-2962 cell
[email protected]
NEBRASKA (DESHLER)
Patricia Schardt
(402) 365-7617
(402) 200-8282 (cell)
[email protected]
NEVADA (RENO)
Rhonda Vega
Gardnerville, NV 89410
(775) 783-9771
[email protected]
LOUISIANA (SHREVEPORT)
Shane Sumlin
Shreveport, LA
(318) 524-1158
[email protected]
NEVADA (CARSON CITY)
Kyle Van Mouwerik
South Lake Tahoe, CA 96150
(805) 801-6961
[email protected]
MARYLAND (WASH. D.C.)
Matt LaRocco
(202) 999-8328
[email protected]
NEVADA (LAS VEGAS)
Barry Mattison
Las Vegas, NV
(702) 530-0900
[email protected]
MARYLAND (SOUTHERN)
Tonya ton
Accokeek, MD 20607
(301) 283-6507
[email protected]
MASSACHUSETTS (BOSTON)
Barbara Kuzmitski
Ipswich, MA 01938
(978) 356-3819
[email protected]
MASACHUSETTS (CENTRAL)
Chris Kourlos
Ashland, MA
(508) 380-8220
[email protected]
MICHIGAN (DETROIT)
Chuck Schotten
Livonia, MI 48150
(734) 261-2481
[email protected] MICHIGAN (DETROIT)
Anjelica Carpenter
Belleville, MI 48111
(313) 989-5352
[email protected]
MINNESOTA (NORTHERN)
Merlaine Taylor
Grand Rapids, MN 55744
(218) 326-8762
MINNESOTA (SOUTHERN)
Gail Buckingham
Owatonna, MN 55060
(507) 456-4456
[email protected]
MINNESOTA (TWIN CITIES)
Aaron Clarke
Eagan, MN 55123
(612) 716-0174
[email protected]
NEW JERSEY (NORTHERN)
Yessica Saez
Elmwood Park, NJ 07407
(551) 444-8545
[email protected]
NEW JERSEY (NORTHERN)
Gina Sharpley
Egg Harbor Twp, NJ 08234
(609) 569-1756
[email protected]
NEW JERSEY (NORTHWEST)
Sheila Blaine
Long Valley, NJ 07853-3186
(908) 432-9244
[email protected]
NEW JERSEY (TRENTON)
Jim Yadlon
Hamilton Square, NJ 08690
(609) 947-2697 cell
[email protected]
NEW JERSEY (OAK RIDGE)
Kristina Orlandi
Oak Ridge, NJ 07438
(973) 208-3322
[email protected]
NEW MEXICO
Rose Gallegos
Espanola, NM 87533
(505) 929-2815
[email protected]
NEW YORK (ALBANY)
D. Alexander Holiday
Albany, NY 12210
518-545-6965 (home)
518-763-7080 (cell)
[email protected]
Summer 2016 | The Communicator
5
Chapter Directory
NEW YORK (BROOKLYN)
Michael Ring
Brooklyn, NY 11215
(347) 328-3713
[email protected]
NEW YORK (BRONX/QUEENS)
Beverly Baker
Bronx, NY 10465
(732) 597-1115
[email protected]
NEW YORK (BUFFALO)
Sr. Eleanor O’Brien
Buffalo, NY 14215
(716) 837-4932
[email protected]
NEW YORK (NEWBURGH)
Bob Burton
(914) 805-3714
[email protected]
NEW YORK (ROCHESTER)
Noreen Reagan
Rochester, NY 14621
(585) 469-0795
[email protected]
NEW YORK (STATEN ISLAND)
Raymond Lopez
Staten Island, NY 10307
(347) 200-4223
[email protected]
NEW YORK (SYRACUSE)
Joan Armstrong
Manlius, NY 13104
(315) 391-6538
[email protected]
NEW YORK (WESTCHESTER CO.)
Steven Smith
New Rochelle, NY 10804
(914) 310-0490
[email protected]
NEW YORK (WESTCHESTER CO)
Jon B. Schandler
Mount Kisco, NY
(914) 505-0002
[email protected]
NORTH CAROLINA
(WINSTON-SALEM)
Jeanette Lawson
Winston-Salem, NC 27104
(336) 765-9498
[email protected]
NORTH CAROLINA (WESTERN)
Judi Jetson
Weaverville, NC
(828) 407-0678
[email protected]
OHIO (AKRON)
Kassandra Ulrich
(330) 724-2608
Akron, OH 44301
[email protected]
6
OHIO (CINCINNATI)
Shawna Kellis
Cincinnati, OH 45245
(513) 233-1556
[email protected]
PUERTO RICO
Widy Figueroa
Isabela, PR 00662
(787) 225-6332
[email protected]
TEXAS (SAN ANTONIO)
Julie Bell
San Antonio, TX 78217
(210) 885-0054
[email protected]
OHIO (COLUMBUS)
William Ansley Jr.
Columbus, OH 43235
(614) 937-1251
[email protected]
SOUTH CAROLINA
Merrilyn Macurak
Conway, SC 29527
(305) 753-8890
(843) 397-8447
[email protected]
TEXAS (WACO)
Diane Wilson
West, TX 76691
(254) 723-1356
[email protected]
OHIO (SOUTHEAST)
Sherry Price
Corning, Ohio 43730
740-605-4840
[email protected]
OHIO (WARREN)
Margee and Tim McKenna
Warren, OH 44483
(330) 360-7419
[email protected]
[email protected]
SOUTH CAROLINA
(CHARLESTON)
Mindy Hester
(864) 923-0725
[email protected]
SOUTH CAROLINA (GREENVILLE)
Pam Wrobel
Greenville, SC 29607
(864) 423-3386
[email protected]
UTAH (SALT LAKE CITY)
Sheila Mota
Salt Lake City, UT
(801) 918-2263
[email protected]
VERMONT
Luey Clough
Ludlow, VT 05149
(802) 259-3491
[email protected]
VIRGINIA (SOUTHWESTERN)
Rick Forney
Hardy, VA 24101
(540) 330-4794
OKLAHOMA (TULSA)
Sue Gerkin
Tulsa, OK 74114
(918) 361-4079
[email protected]
TENNESSEE (JACKSON)
Wenesday Ketron
Jackson, TN
(731) 267-8311
[email protected]
OREGON (PORTLAND)
Matt LaRocco
Portland, OR 97201
(202) 999-8328
[email protected]
TENNESSEE (MEMPHIS)
Brenda Hale
Memphis, TN 38134
(901) 288-4164
[email protected]
OREGON (PORTLAND)
Dick Beukema
McMinnville, OR 97128
(435) 658-5430
[email protected]
TEXAS (BROWNSVILLE)
Nancy Skidmore
Brownsville, TX 78521
(956) 459-9289
[email protected]
PENNSYLVANIA (ALTOONA)
Rena Jo Gossard
Altoona, PA 16602
(814) 232-5104 cell
[email protected]
TEXAS (DALLAS)
Amy Rollason
Terrell, TX 75160
(214) 208-0246
[email protected]
PENNSYLVANIA (PHILADELPHIA)
Barbara Anne Fowkes
Doylestown, PA 18901
(215) 348-7515
[email protected]
or contact
The Foundation Office
Narberth, PA 19072
(610) 667-0131
[email protected]
TEXAS (FRISCO) PEDIATRIC
Renee Richmond
Frisco, TX 75035
(214) 732-8542
[email protected]
PENNSYLVANIA (PITTSBURGH)
Dan Budny
Pittsburgh, PA 15201
412-607-1684
[email protected]
TEXAS (FORT WORTH)
Valerie Keller
Hurst, TX 76054
(682) 552-1317
[email protected]
WEST VIRGINIA
David Sullivan
Morgantown, WV 26508
(304) 594-8041 – home
(304) 376-8041 - cell
[email protected]
TEXAS (HOUSTON)
Patsy Organ
Magnolia, TX 77354
(281) 356-7960
[email protected]
WISCONSIN (MADISON)
Emily Fruik
Black Earth, WI 53515
(708) 710-7334 cell
[email protected]
The Communicator | Summer 2016
VIRGINIA (MANASSAS)
Barbara Brandt
Manassas, VA 20112
(703) 220-2342
[email protected]
VIRGINIA (NORTHERN)
Brenda Crafton
Herndon, VA 20171
(703) 437-7134
[email protected]
VIRGINIA
(STAUNTON/AUGUSTA COUNTY)
Wayne Bowyer
Staunton, VA
(540) 448-5767
[email protected]
WASHINGTON (TACOMA)
Lee Ann Gooseman
Auburn, WA 98001
(253) 833-0576
[email protected]
GBS |CIDP Foundation International
Chapter Directory
International Contacts
ARGENTINA
Lic. Ernesto C. Galeano
Buenos Aires
011-54114-862-0782
[email protected]
AUSTRALIA (NSW)
Christine Simpson-Morgan
Epping, NSW
61-2-9617 0883
www.gbs-cidp-nsw.org.au
[email protected]
AUSTRALIA (NSW)
Toni Louise Louttit
Cootamundra, NSW
0422 826 421
[email protected]
AUSTRALIA (S.A.)
Beth Morgan
Tea Tree Gully, 5091
08 8264 1988
[email protected]
AUSTRALIA (QUEENSLAND)
Lara-Jade David
Cairns, Queensland 4870
+61 406 432 372
[email protected]
AUSTRALIA (VICTORIA)
Kath Donaldson
Victoria 3023
0011 6139 361 1190
[email protected]
AUSTRALIA (TASMANIA)
John Stanley
Devonport, Tasmania
0419-328-665
[email protected]
AUSTRALIA (VICTORIA)
Melva Behr
Beaconsfield, Victoria
+03 9707 3278
http://www.ingroup.org.au/
[email protected]
[email protected]
AUSTRALIA (WESTERN)
Jeff Ibbotson
Perth, Western Australia
(+61) 0417 174 263
[email protected]
AUSTRIA (See Germany)
Albert Handelmann
BELGIUM (BRUSSELS)
Thierry Brouwer
Brussels
322-241-7011
[email protected]
BELGIUM (NORTH)
Bet Geukens
Aalst
32-53/704-159
[email protected]
or
Filip Rabaut
Harelbeke
0474 634 160
[email protected]
BOLIVIA
Ingrid Penarrieta
La Paz
(591) 2721540 home
(591) 70592902 cell
[email protected]
BOSNIA AND HERZEGOVINA
Izet Cišic
Zenica
00387 62 632 920
[email protected]
BRAZIL
Marcio Pocciotti
Jundiaí, São Paulo
+55 11 98224 5969
[email protected]
BRAZIL
Gonzalo Pozo
São Paulo
+55 11 95107 0414
[email protected]
BRAZIL
Camila Pomar Gargalaca
São Paulo
+55 11 981282555
[email protected]
GBS|CIDP Foundation International
CANADA
Donna Hartlen
Executive Director
GBS|CIDP Foundation of Canada
1 (647) 560-6842
gbs-cidp.org/canada
[email protected]
CHINA
Lu Kai
Nanjing P.R.
+86 13645176633
[email protected]
CHINA
Vincent Yao
Tian Jin City
-086 13512244553 cell
[email protected]
COLOMBIA
Diana J. Gutierrez Ahumada
Bogota
2602010 home 3132708263 cell
[email protected]
CYPRUS
Dr. Kleopas A. Kleopa
The Cyprus Institute of
Neurology and Genetics
Nicosia
(+357)-22358600
[email protected]
EGYPT (See Kuwait)
Hala Ahmed
ETHIOPIA
Tedla Mekonnen Gebretsadik
Addis Ababa
251 11 663 5178
251 91 123 0658 cell
[email protected]
FRANCE (NANTES)
Jean-Philippe Plançon
La Baule-Escoublac
0033-(0)-652462492
[email protected]
GERMANY
Albert Handelmann
Monchengladbach
+49(0) 2161-480499
+49(0) 170-8892021
[email protected]
GERMANY (SOUTH)
Eva Fels
Boos
08335/8663
[email protected]
GERMANY (SOUTH)
Doris Krönert
Fuerth
0911/ 76 48 45
[email protected]
HONDURAS (TEGUCIGALPA)
Dr. Sara Alicia Ordóñez Fiallos
[email protected]
(504) 9858-8708
HUNGARY
Adrienn Cilárik
Szentendre
+36202189474
[email protected]
INDIA
Dr. Arindam Anneshan
Kolkata,West Bengal
+9194330 14707
[email protected]
INDIA
Ramgopal Vallath
Bangalore
+91 9980307777
[email protected]
IRELAND (See UK)
ISRAEL
Chen nberg
Jerusalem
052-5015524
[email protected]
ITALY (NORTH)
Giovanni Giavelli
Reggio Emilia
0522-541443
327 4449596 cell
[email protected]
ITALY (SOUTH)
Salvatore Iannotti, MD
Benevento
39 0824.977451
[email protected]
CIDP Group in Italy
www.cidp.it
JAPAN
CIDP SUPPORT GROUP
Taisho University, Aoki Laboratory
Tokyo
Tel: 81-3-5962-7700 Japanese and
recording message only
Fax: 050-2200-5803
[email protected]
www.cidp-sgj.org Japanese only
KENYA
Karani Kinyua
Nairobi
Tel 0720-560078, 0733-532647, 0202091405
[email protected]
or
Catherine Wanjiku Kiarie
Kiambu
+254-721-291-858
[email protected]
KUWAIT
Hala Ahmed
Ahmadi, Kuwait
+965 97941410
[email protected]
LICHTENSTEIN (See Germany)
Albert Handelmann
MALAYSIA
Khaizan Sharized
Selangor Darul Ehsan
+6012-9069658
[email protected]
MALTA
Trevor Sammut
Birikirkara
+356 79302328
[email protected]
MEXICO
Valentina Treviño
Chihuahua, Chihuahua
614 394 3157
[email protected]
or
Armando Pereda
Mexico Distrito Federal C.P. 15900
521 (55) 35147740
[email protected]
NEPAL
Nasim Ansari
Kathmandu
+977 –(1) 44-690 20 main
980 20 33303 cell
[email protected]
[email protected]
www.gbs-cidp-nepal.org
NETHERLANDS
Patricia H. Blomkwist-Markens
Amsterdam
011-31-20-6440453
011-31-6 44 988 492 cell
[email protected]
NEW ZEALAND (NELSON)
Tony Pearson
Upper Moutere, Nelson 7175
+ 64 3 526 6076
[email protected]
www.gbsnz.org.nz
NEW ZEALAND (WELLINGTON)
Bob Stothart
Wellington
04-3850240
[email protected]
www.gbsnz.org.nz
NIGERIA
Sosanya Babafemi Adeoluwa
Kaduna
+23480-53497498 +23480-39140470
[email protected]
PAKISTAN
Khalid Mehmood Zia
Pakistan Myasthenic Welfare Organization
Islamabad
+0092512262830
[email protected]
www.pmwo.org.uk
PERU (See Brazil)
Gonzalo Pozo
PHILIPPINES
Catherine Quiambao
Las Pinas, Metro Manila
+639178072981
[email protected]
www.gbs-cidp-ph.org
POLAND
Joanna Opiat-Bojarska
Borówiec
0607393509 cell
[email protected]
ROMANIA
Darius Filip
Jud Satu Mare
0040758608224
[email protected]
SOUTH AFRICA (GAUTENG)
Bob Oakes
Farrarmere, Benoni
011 849 6349 home 083 450 2026 cell
[email protected]
SOUTH AFRICA (EASTERN CAPE)
Evan Rothman
Uitenhage, Eastern Cape
27 41 9661845
[email protected]
SOUTH AFRICA (EASTERN CAPE)
Mia van Daalen
Jeffreysbay, Eastern Cape
(+27) 0826553570
[email protected]
SOUTH AFRICA (WESTERN CAPE)
Marion Oosthuysen
Sunningdale, Capetown
27 21 556 5157
[email protected]
SOUTH AMERICA
Santo Garcia
Florida
239-565-8300
[email protected]
SPAIN (BARCELONA)
Juan Antonio Lopez Valverde
Els Pallaresos
606-83.93.96
[email protected]
SPAIN (MADRID)
Alejandra Pérez del Real
Madrid
69372220
[email protected]
SWEDEN
Claus Zimmermann Pedersen
Hästveda
+46 70 994 4207
[email protected]
gbssverige.com
SWITZERLAND (See Germany)
Albert Handelmann
TURKEY
Dr. (Ms) Can Ebru Kurt
90 533 2249252
[email protected]
TURKEY
Sait Mentes Birlik
90.533.0903263
[email protected]
UK AND IRELAND
Gill Ellis
Support Officer
Guillain-Barre & Associated Inflammatory
Neuropathies
T: +44 1529 469910 F: +44 1529 469915
24hr helpline UK - 0800 374803
or Ireland 1800 806152
[email protected]
President Emeritus: Glennys Sanders MBE
VENEZUELA
Armando J. Salas Nava
Maracaibo
58-261-7577340
[email protected]
WEST INDIES (TRINIDAD/TOBAGO)
Christine Bunting
Arima
(868) 667-1592
[email protected]
WEST INDIES (TRINIDAD)
Nick & Nicole Galt
Westmoorings on the Sea
(868) 633-4069
[email protected]
[email protected]
ZIMBABWE
Chengetai Chinguwa
Harare
+263-775-552-710
[email protected]
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 inišally announced our curriculum in April,
and we have some excišng news!
Introducing: One on Ones with our Global Medical Advisory Board!
Space is limited. We will be offering the opportunity for a group of our members to meet individually face to face with our worldrenowned 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 event 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 Hotel
❖ 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(GO 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
Thursday September 22nd 2016
12pm – 5pm – Lobby Registraon
5pm-7pm – Western Welcome Reception
rd
Friday September 23 2016
7:00 – Registraon Resumes in Foyer
7:00 – 8:00 – Connental Breakfast
8:15-8:30 – Morning Meditation
Instructor: Pam Butler
8:40-8:55 – Welcome Introduction
Presenter: Lisa Butler & Santo Garcia
9:00-9:30 – Keynote Speech – Current Foundation Topics
Presenter: Dr. Ken Gorson & Dr. Bart Jacobs
9:40-10:40 – Managing Pain
Presenter: Dr. Alejandro Tobon
COFFEE BREAK
CONCURRENT SESSIONS: (Please Select One)
11:00-12:00 – Managing GBS Residuals
Presenter: Dr. Richard Lewis
11:00-12:00 – Teen Session – Living with CIDP
Presenter: Dr. Diana Castro
11:00-12:00 – Vaccinations
Presenter: Dr. John England
12:00-1:15 – LUNCH
Op…onal Sessions
Yoga Session with Kristen Weaver/Sterling Yoga
Hugh Williams – FiŒy Two Fives ‘Why I Ran’
Post Lunch Teen Ac…vity – Visit to the Alamo
CONCURRENT SESSIONS:
1:20-2:00 – Current Research - GBS
Presenter: Dr. Ken Gorson
1:20-2:00 – Current Research – CIDP
Presenter: Dr. David Cornblath
1:20-2:00 – Current Research – MMN
Presenter: Dr. Richard Lewis
CONCURRENT SESSIONS:
2:10-3:00 – CIDP - "Stem Cell Transplantation: Treatment for
CIDP by Rebooting the Immune System"
Presenters: Dr. Richard Burt
2:10-3:00 – Adaptive Equipment
Presenter: To be determined
2:10-3:00 – GBS Modified Therapies Research - Annexon
Presenter: Mario Saltarelli, MD, PhD, Chief Medical Officer
3:10-3:35- Kickoff Chair Aerobics
Presenter: Santo Garcia
CONCURRENT SESSIONS:
3:45-4:35 – Sexual Health (Men)
Presenter: Dr. Joel Steinberg & Santo Garcia
3:45-4:35 – Sexual Health (Women)
3:45-4:35 – CIDP – Beyond IVIG & Steroids, Stem Cell
Research, & More.
Presenters: Dr. David Cornblath, Dr. Ken Gorson
GBS|CIDP Foundation International
3:45-4:35 – GBS Protocols
Instructor: Dr. Bart Jacobs
CONCURRENT SESSIONS:
4:45-5:45 – ASK THE EXPERTS – GBS
Presenters: Dr. Bart Jacobs, Dr. Ken Gorson & Dr. John
England (Moderated by Dr. Carol Lee Koski)
4:45-5:45 – ASK THE EXPERTS – CIDP & MMN
Presenters: Dr. David Cornblath, Dr. Kazim Sheikh & Dr.
Richard Lewis (Moderated by: Santo Garcia)
Members break for evening - Dinner on own
7:00-9:00 – Meet & Greet & Sweets
Saturday September 24th 2016
7:00 – Registraon Resumes in Foyer
7:00 – 8:00am – Connental Breakfast
8:00-8:15 – Morning Meditation
Instructor – Pam Butler
8:15-8:45 – Kickoff Speech – Zika Virus
Presenter: NIH
8:50-9:40 – The Power of Mindfulness
Presenter: Penny O’Brien, MS
9:30-11:00 - Global Medical Advisory Board – One on Ones
COFFEE BREAK
CONCURRENT SESSIONS:
10:00- 10:50– Fitness – Getting Moving Again
10:00- 10:50 – Patient Financial Assistance Panel
11:00-11:30 – Meet Fellow Patients!
11:30-12:45 – LUNCH
Oponal Sessions
Yoga Session with Kristen Weaver/Sterling Yoga
Post Lunch Teen Acvity – Visit to the Riverwalk
12:55-1:20- Afternoon Chair Aerobics
Presenter: Santo Garcia
CONCURRENT SESSIONS:
1:30-2:20- Alternative Therapies
Presenter: Dr. Terry Harville
1:30-2:20 – Be Your Own Advocate Panel
Presenter: Jim Crone, Dr. Joel Steinberg & Estelle Benson
1:30-3:00 - Global Medical Advisory Board – One on Ones
CONCURRENT SESSIONS:
2:30-3:20 – Emotional Issues - Patients
2:30-3:20 – Emotional Issues - Caregivers
Presenter: Lynn Kunauer, Ph.D.
3:30-4:20 – Foot Care 101
Presenter: Dr. Jeffrey Gerland
CONCURRENT SESSIONS:
4:30-5:30 – ASK THE EXPERTS – GBS
Dr. Bart Jacobs, Dr. Ken Gorson & Dr. John England
(Moderated by Estelle Benson)
4:30-5:30 – ASK THE EXPERTS – CIDP & MMN
Presenters: Dr. David Cornblath, Dr. Kazim Sheikh & Dr.
Richard Lewis (Moderated by: Dr. Carol Lee Koski)
6:30pm-9:30pm – Closing Celebration Fiesta
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: _____________________________________________________
Last Name: _____________________________________________________
Street Address: __________________________________________________
Address Line 2: __________________________________________________
City: ___________________________________________________________
State / Province / Region: __________________________________________
ZIP / Postal Code: ________________________________________________
Phone: ________________________________________________________
Email Address: __________________________________________________
Credit Card Number: _____________________________________________
MMN
MMN Patient
Paent
Miller Fisher
Fisher Paent
Miller
Patient
Teen
Teen
Child (up to 12 years)
Family/Friend
Child (up to 12 years)
Liaison
Sponsor
Family/Friend
(_____________)
Liaison
Medical Professional
(_____________)
Sponsor
Other
( _________________ )
(_____________)
Medical Professional
( _________________ )
Other
( _________________ )
Expiraon: ____________________ Security Code (CVV): ________________
To pay by check: Please make checks payable to GBS|CIDP Foundaon Internaonal and
return with registraon informaon.
Affiliation:
GBS Paent
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 telephone 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
agency can work together. Dr. Fauci spoke about the agency’s response to Zika
and the need for robust funding to help combat the spread of the virus. Dr. Fauci
also discussed in detail possibilities to work with NINDS and NIAID to expand
the research and understanding of the link between Zika and GBS.
Dr. Ken Gorson, Chair of
Global Medical Advisory Board,
Dr. Anthony Fauci, Director of
National Institute of Allergy and
Infectious Disease,
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
environment for thousands of patients, families and caregivers at more than
50 chapter meetings held so far in 2016 in the United States 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]
for information about chapter meetings in your area.
Spring Update
New Jersey chapter meeting
Southern Maryland, Virginia, and
Washington DC multi-chapter meeting
“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?
Contact: Dominick Spatafora
[email protected]
Miller Fisher Variant Group
Please call the National Office for
contact with others.
Children with GBS
Lisa Butler, 610-667-0131
GBS|CIDP Foundation International
Email: [email protected]
Son, Stuart had GBS at 5 1/2 years old
Children with CIDP
For children diagnosed with CIDP
contact Holly Cannon whose daughter
Hailey has CIDP.
[email protected]
Looking for a 20-Something Contact?
Contact: Kyle Van Mouwerik
[email protected]
Teenagers with GBS and CIDP
We are launching a new online
support forum for teens ages 12 to 18
to connect with one another, share
stories, and support each other.
This group is also open to teenage
children of patients. Contact the office
to find out how to join!
National Office: 610-667-0131
Pregnant Women with GBS
Robin Busch, 203-972-2744
264 Oenoke Ridge
New Canaan, CT 06840
Robin has offered to share her
experience with GBS which came
about during her pregnancy. We have
many such cases and reassurance
from someone who has gone through
this is needed support.
Advocacy
If you are interested in advocacy
activities on a federal, state,
or local level contact the
Foundation office to sign up!
Be sure to inform the International
Office if you have been diagnosed
with one of the following. This
will add you to condition-specific
communication.
AMAN
AMSAN
Anti-MAG
Campylobacter
GBS X2
Miller Fisher
MMN