Cheers to 30 Years! It was the best of all worlds this past November at the 2018 Symposium in San Diego where a record-breaking 575 attendees gathered for 3 days of GBS|CIDP patient support, education, research and advocacy! Thank you to our presenters, sponsors, volunteers and every member of this amazing community for the moments & memories that will last a life time. A special thank you to our international circle of friends from around the globe including France, Canada, Australia, Japan, German, Italy, Mexico, Nepal, the Netherlands, England, Trinidad & Tobago. We are delighted to have met you and look forward to supporting you and expanding our programs for you worldwide.
“We are at the Symposium for the first time. It has only just kicked off but it has already been such an amazing experience for our family. Thanks to all who make these meetings possible so we can connect with others and learn!” – Charlene Cowell.
A Walk & Roll like NEVER BEFORE…
Our San Diego Welcome Walk kicked off the Symposium with a burst of energy, warmth and friendship – not to mention a glorious view of Mission bay at sunset! Over 300 participants gathered for a one mile walk to the Symposium opening reception. Sponsors of the event cheered patients from the sidelines and the spirit of hope and camaraderie grew stronger with each step.
“Michael Coleman’s key note address warmed and inspired me. How wonderful to be so open to share your experiences with us. You are not alone.” – Randy
A note to our KEYNOTES
Thank you to our Keynote Speakers, Dr. Richard Lewis and TV actor and GBS survivor, Michael Coleman for their powerful and supportive messages, setting the tone with an inspiring note for the days ahead! As jokingly expressed by Michael Coleman, “I love being in the GBS|CIDP club, but it was a heck of an initiation!”
A Special Moment of GRATITUDE to our Volunteers..
VOLUNTEERISM AT ITS FINEST… Benson volunteer awards were given to four of our passionate volunteers by none other than Founder Estelle Benson herself. These dedicated volunteers best represent the mission pillars of the organization. Included in the roster were Board of Directors member and Regional Director Jim Yadlon, for his unwavering commitment to SUPPORT, GMAB member Dr. Richard Lewis for is determination to EDUCATE patients worldwide, GMAB member Dr. Kazim A. Sheikh for his innovative spirit and dedication to RESEARCH, and Liaison, Hill Day Advocate and Walk & Roll Chair, Tonya Charleston, for her passion and persistence in the area of patient ADVOCACY.
DEDICATED Team of Medical Professionals
Where would be without the passion and dedication of our GBS|CIDP of medical professionals? Over 65 patients were able to meet for 15 one-to-one discussion with some of the top neurologists in the world! And if more questions arose after their meeting, there was ample opportunity to ask during our 4 “ask the experts” breakout sessions
Additionally, a well-deserved & HUGE shout out to our sensational roster of presenters for sharing expertise on everything from dealing with fatigue, insurance and advocacy, coping with residuals, and much, much more. A special thank you to newcomers on the presenting team including, Jeff Wertheimer, Charla Illiano, Maria Fronczkowki, Amy Clarke, Julie Rowan, Linda Bruebaker, Ted Yednock, Sterling Painton and Frank Williams, for their outstanding presentations and workshops including: emotional health, PT/OT, best practices for IVig, integrative healthcare, guidance on sexual health issues for women, promising new therapies for GBS, and transformational topics and tips for coping with physical and mental stress.
ZEN Den, More please….
Attendees are still talking about our new feature, the Symposium Zen Den! If you were unable to stop by for a visit or not able to attend the Symposium, not to worry – we hear you! You can expect more resources for calming the body, and the mind, in upcoming weeks with the help of our amazing “Zen Den” team.
Old FRIENDS Meeting for the FIRST Time…
Friendships blossomed throughout the three day event, and we were all delighted to see how many folks were exchanging contact information, and eager to talk with their GBS|CIDP regional directors, as well as other attendees from their region who shared a similar condition. New attendees were welcomed and supported by an enthusiastic troop of committed volunteers, staff and physicians. But, as with most GBS|CIDP Foundation Symposia, the atmosphere reached far beyond that of an extensive reunion of commonality – it did, no doubt, grow to a festival of kindness and kinship for patients & caregivers in need.
INDUSTRY meets patients one-on-one
Our Industry sponsors including CSL Behring, Grifols, Kedrion, Shire, PPTA, NuFactor, Soleo Health, RMS Medical Products, Accredo, NeuroCareLive/PlatformQ, Briova, Kroger and Diplomat Pharmacy, seamlessly joined the conference-wide conversation, along with a buzzing crowd of patients and caregivers in a friendly atmosphere of story sharing and product education. To that e
nd we are so grateful for the support and “patient-first culture” set by our industry partners and are excited to have them as a part of the GBS|CIDP community!
GBS|CIDP Foundation Benson Fellow Awardees
The audience was delighted to meet our most recent GSB|CIDP Benson Fellow Dr. Ruth Huizinga, from Eramus University Medical Center in Amsterdam and Dr. Janev Fehmi of the Nuffield Department of Clinical Neuroscience (NDCN) in Oxford, England, both traveling thousands of miles to present their research study updates. Ruth and Janev presented on their topics of interest including identification of genetic causal variants of GBS, and characterising the pathogenic mechanisms of nodal auto-antibodies in the inflammatory neuropathies.
PATIENTS WIN Big!
Thank You to all who purchased raffle tickets for Symposium raffles! Congratulations to all of our winners and a special congratulations to our big ticket item winners including a custom GBS fire pit created by artist Sean Young and won by member Kathryn Rierson. And a BIG heartfelt hug to the ladies who worked tirelessly crafting the GBS t-shirt quilt! Last but not least, a thank you from the bottom of our hearts to our kind and generous regional directors who donated the quilt back to the GBS|CIDP Foundation staff!
“It was a wonderful symposium and a fabulous experience and I cannot express in words how much I appreciated the scholarship I was given. I learned a lot and was able to meet many wonderful people who share my struggles. I am no longer alone in my battle so I am very grateful. Thank you!” – Bob Holt.
A SURPRISE Announcement for 2020
After a fun and festive closing celebration, a special video was played announcing our location for the 2020 GBS|CIDP Foundation International Symposium! Drum roll….. we are pleased to announce it will be in October in Alexandria, VA! The event will be preceded by a Patient Advocacy Day on Capitol Hill! More information will be shared in the spring, 2019 Communicator and online at gbs-cidp.org. We hope you can join us!
This Rare Disease Day (February 28), the GBS|CIDP Foundation will be launching an online Patient Registry for patients with GBS|CIDP or variants of the condition. The GBS|CIDP Patient Registry, consisting of patient reported surveys & questionnaires, will allow healthcare professionals access to critical, de-identified patient data, while pursuing medical advancements and developing patient resources. It will be hosted in partnership with the National Organization for Rare Disorders (NORD); an independent non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations who serve them. Studies of these conditions may take years to finish, but patient reported registries provide power in numbers! The Foundation will provide periodic updates and results with the discoveries made possible with this impactful data.
We would like to congratulate Gil I. Wolfe, MD, dedicated member of our Global Medical Advisory board for his election as president of the New York State Neurological Society (NYSNS). He assumed the presidency following the society’s annual graduate medical education conference held in New York City on Jan. 5. 
