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14Thinternational Symposium 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 Puerto Rico. 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.
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