The GBS|CIDP Foundation International, one of the first member organizations of NORD, works towards a future when no one with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes such as multifocal motor neuropathy (MMN) suffers alone and everyone has access to the right diagnosis and treatment, right away.
In 1979, when GBS|CIDP Foundation International founder Estelle Benson’s husband was diagnosed with GBS, she vowed that she would do something about the lack of information and support she and her husband faced. Shortly after, Estelle welcomed eight people into her home for a support group. Since then, that support group has grown into a thriving patient advocacy organization that now boasts 35,000 members with 190 chapters in 46 countries.
From the very start of the foundation, the patient has always come first. “We never to this day, over thirty years later, never lose sight of what the goal is. We never lose sight of the patient,” she says.
Estelle believes that this patient-focused approach has helped with the expansion of the foundation across the globe. Additionally, the group has paved the way for others who wanted to get involved in their cause.
Abbey Meyers, NORD’s founder and first president, agrees. “During my time as president of NORD, many rare disease support group leaders would call us about administrative problems they were experiencing. I would tell them to call Estelle Benson because she understood the basic rules of effective leadership,” she says. “For Estelle, leadership was not telling people what to do; she actually made them want to do it.”
As a NORD board member for many years, Estelle interacted with others in ways that were helpful to NORD and also to her own organization. Today, what began as a small operation headquartered on Estelle’s household ping-pong table has matured into a fully operational 501(c)(3) organization with 10 full-time staff members.
GBS|CIDP Foundation International has succeeded in creating 40 centers of excellence around the world, releasing numerous research grants and hosting three patient conference each year, and engaging with advocates in an awareness month each May.
NORD is honored to have the GBS|CIDP Foundation International as a long-time member and to honor their founder, Estelle Benson, tonight with the 2018 Abbey S. Meyers Award.
Join us during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards on May 17!
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