The Foundation
The GBS | CIDP Foundation International is a global nonprofit organization committed to improving the lives of those affected by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), and related conditions through support, education, research, and advocacy.
Our Mission
We improve the quality of life for individuals and families affected by GBS, CIDP, MMN, and related conditions.
Our unwavering commitment is built on four pillars.
Support
Nurturing a global network of volunteers, healthcare professionals, researchers, and industry partners to provide them with critical, timely, and accurate information.
Education
Helping doctors, clinicians, patients, and caregivers increase their awareness and understanding.
Research
Funding research through grants, establishing fellowships, and other appropriate avenues to identify the causes of and discover treatments.
Advocacy
At the federal, state, and grassroots levels, to educate policymakers and help them make informed decisions that benefit our patient community.
Our Vision
Every person affected by GBS, CIDP, MMN, or related syndromes will have access to early and accurate diagnosis, appropriate treatment, and knowledgeable support services.
Our Core Values
Every person affected by GBS, CIDP, MMN, or related syndromes will have access to early and accurate diagnosis, appropriate treatment, and knowledgeable support services.
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Patient Inclusivity, we empower and prioritize the voice of the patient community in all Foundation decisions and activities.
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Empowerment, we empower the patient community by providing opportunities, support, and education to advocate for themselves at every step of their journey.
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Innovation, we endeavor to be agile and adaptive by consistently seeking continuous improvement and opportunities that deliver maximum value to our stakeholders.
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Trust, we see ourselves as a place of trust and integrity. We will be open, honest, and transparent in our partnerships and actions. We will vet and verify our information with leading experts for relevance, value, and accuracy.
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Compassion, we understand that the patient community faces life-changing events. For those affected, we build an understanding community of people ready to listen and respond in a timely manner. We create connections that serve as a lifeline of support throughout their journey.
MEET OUR FOUNDER
Estelle Benson
Founder, GBS|CIDP Foundation International
In 1979 my late husband, Robert, came down with a bad cold and pneumonia. One week later he was in the hospital, paralyzed, and we were given the diagnosis of Guillain-Barre Syndrome. We We had no idea what it was and we couldn’t pronounce or spell it. There was no information and no one for him to speak to, we were all alone. I vowed then and there, that if he ever recovered, we would do something about it.
One year later I met with 8 people who were affected by Guillain-Barre Syndrome, in my home, for a small support group. Using the leadership and organizational skills I’d acquired as a teacher and a school administrator for many years, eventually, our little group began to grow. With support of people like Abbey Meyers from NORD, the neuromuscular medical community, and many others who kept inspiring me to keep moving, we are proud to say that the GBS|CIDP Foundation now has over 200 chapters in 46 countries and counting! However, through it all, we have never lost sight of why we started the foundation, and that is, and will always be, putting the patient first. We vow that no one will ever be alone in this journey.
Our Vision and Mission is that every person affected by GBS, CIDP, or related syndromes will have access to early and accurate diagnosis, appropriate treatment, and knowledgeable support services. Our unwavering commitment to the patients we serve is built on four pillars: support, education, research and advocacy.
I am humbled to receive many awards on behalf of the many people who we serve, most recently including, the 2015 President’s Award from Patient Services Inc., the 2018 Honoree for the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders, and the 2020 AANEM’s Public Recognition Award.
Even though I have technically retired, I am still very involved with the Foundation, and doubt that will ever change. I’m very proud of my family, 2 children, 4 grandchildren and I have recently become a great grandmother.
Our Impact
Million in Research Grants Awarded
Researchers Funded Since 2004
Volunteers in 46 Countries