Foundation News

New GBS|CIDP Patient Registry Launching on Rare Disease Day!

No better way to show you care for rare.

Rare Disease Day LogoThis 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.

On this Rare Disease Day, and beyond…if you are a patient, or represent a patient living with GBS, CIDP or a variant of the condition, we encourage you to enroll in GBS|CIDP patient registry and show you care for rare!

  • FAQ
  • Enroll in Patient Registry – information coming soon!


A 30th Celebration to Remember

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!”

GBS CIDP International Foundation Symposium 2018

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.

GBS CIDP International Foundation Symposium 2018 - attendees

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.

GBS CIDP International Foundation Symposium 2018 - Lisa Butler


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 We hope you can join us!


GBS CIDP Foundation International Earns Coveted 4-Star Rating From Charity Navigator

Charity Navigator 4 Stars
7th consecutive time that GBS|CIDP Foundation International has earned 4-Star Rating from Charity Navigator

Conshohocken, PA (December 4, 2018) – GBS|CIDP Foundation International’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator.  This is the 7th consecutive time that GBS|CIDP Foundation International has earned this top distinction.

Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating. In 2011, Charity Navigator added 17 metrics, focused on governance and ethical practices as well as measures of openness, to its ratings methodology.  These Accountability & Transparency metrics, which account for 50 percent of a charity’s overall rating, reveal which charities operate in accordance with industry best practices  and whether they are open with their donors and stakeholders.  On June 1, 2016, Charity Navigator upgraded their methodology for rating each charity’s’ financial health with CN 2.1. These enhancements further substantiates the financial health of their four star charities.

GBS|CIDP Foundation International’s exceptional 4-star rating sets it apart from its peers and demonstrates its trustworthiness to the public,” according to Michael Thatcher, President & CEO of Charity Navigator. “Only a quarter of charities rated by Charity Navigator receive the distinction of our 4-star rating. This adds GBS|CIDP Foundation International to a preeminent group of charities working to overcome our world’s most pressing challenges. Based on its 4-star rating, people can trust that their donations are going to a financially responsible and ethical charity when they decide to support GBS|CIDP Foundation International.”  

“It’s important our donors trust that we’re using their donations wisely to accomplish our mission of supporting, educating, funding research, and advocating for patients coping with Guillain-Barre Syndrome (GBS), CIDP, or variants of the condition,” said Lisa Butler, Executive Director.  “Our 4-star Charity Navigator rating demonstrates to our supporters our good governance and financial accountability.”

GBS|CIDP Foundation International’s rating and other information about charitable giving are available free of charge   More-detailed information about GBS|CIDP Foundation International’s rating is available to Charity Navigator site visitors who become registered users, another free service.

About Charity Navigator

Charity Navigator,, is the largest charity evaluator in America and its website attracts more visitors than all other charity rating groups combined. The organization helps guide intelligent giving by evaluating the Financial Health and Accountability & Transparency of more than 8,000 charities. Charity Navigator accepts no advertising or donations from the organizations it evaluates, ensuring unbiased evaluations, nor does it charge the public for this trusted data. As a result, Charity Navigator, a 501 (c) (3) public charity itself, depends on support from individuals, corporations and foundations that believe it provides a much-needed service to America’s charitable givers. Charity Navigator, can be reached directly by telephone at (201) 818-1288, or by mail at 139 Harristown Road, Suite 101, Glen Rock, N.J., 07452.

About GBS|CIDP Foundation International

The GBS|CIDP Foundation International is the preeminent global non-profit organization supporting individuals and their families affected by GBS|CIDP, and related syndromes such as multifocal motor neuropathy (MMN) through a commitment to support, education, research, and advocacy. For more information visit,

Contact: Maureen Neville E:, Director of Marketing & Communications, GBS|CIDP Foundation International,  610-667-0131 x 27.

One-Day Regional Meetings Are Back for 2019

GBS-CIDP team with tee shirts

A little spirit of a chapter meeting & a taste of a symposium – these one day conferences will offer support, education, research updates and opportunities for patient advocacy. Each meeting will bring together local physicians, patients, caregivers and loved ones for a day of sharing, learning and connecting. Registration is $40, including all sessions, breaks & boxed lunch. (Does not include accommodations). For more information contact Kelly McCoy.