When Estelle Benson founded the GBS (Guillain Barré syndrome)/CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) Foundation 35 years ago, the support group started with eight members and held their meetings in her living room. Little did she imagine the group would swell to 35,000 members by 2018 with 190 chapters in 46 countries.
Earlier this month, Estelle was recognized for her years of service to the GBS and CIDP communities with the National Organization for Rare Disorders (NORD) Abbey S. Meyers Leadership Award. The award is a fitting tribute during GBS/CIDP Month to a woman who has done so much for so many.
Estelle established the foundation after her husband, Bob, was diagnosed with GBS, a rare inflammatory disorder of the peripheral nerves characterized by the rapid onset of numbness, weakness and often paralysis of the legs, arms, breathing muscles and face. CIDP is a chronic form of GBS characterized by gradually increasing sensory loss and weakness associated with loss of reflexes.
It was a scary time for the two of them and, to this day, Estelle can recall the trauma of receiving the news. “When GBS happens to you it’s catastrophic. We had two kids in college and we weren’t familiar with the disorder,” she says. Estelle adds there was precious little information about GBS at the time, let alone support services for her husband.
“Bob and I promised each other that if he survived, we would do something about it.” Thankfully Bob survived and Estelle, true to her word, formed a support group which through hard work and careful planning evolved into a global patient advocacy group.
According to Estelle, in the early years of the group’s existence she and the other members were deliberate in their approach to managing and growing the foundation, guided by its four mission pillars that have remained constant: support, education and awareness, research and advocacy.
She credits NORD with much of the foundation’s success. “We would not have gotten to where we are without NORD,” she acknowledges. “Abbey Meyers, who founded NORD and had two children with a rare disorder, was my mentor. I learned so much from her – things like how to apply for 501(c)(3) status or publish a newsletter. Receiving the award named after Abbey is special.”
Estelle also credits the foundation’s global medical advisory board, which includes some of the world’s top neuromuscular neurologists, with playing a major role in the foundation’s growth and success. And she says the foundation’s network of volunteers is the engine that drives the organization.
“Our volunteers make patient visits, organize local chapters, facilitate support group meetings, hold walk events and engage in grassroots advocacy. We visit people with GBS in the hospital to let them know, ‘you can get better and get out of the wheel chair.’ This is still one of the most important things we do.”
She says she and her associates never lost sight of why they started the GBS/CIDP Foundation. “Our goal was to take care of the patients,” she says, “and everything else followed.” This approach has also been successful in establishing GBS/CIDP Foundation chapters in places like Fiji, Kenya and China.
Every year the foundation awards multiple research grants including the Benson Clinical Research Fellowship. A global symposium is held every other year, supplemented by regional gatherings and local “Manage Your CIDP” programs.
One of the biggest challenges the foundation continues to face is a lack of awareness.
“People with GBS or CIDP have to be diagnosed properly,” Estelle says. “Many neurologists don’t know how to do it. A neuromuscular neurologist does, but there aren’t enough of them. We work to educate doctors and arrange consultations for them with a specialist on our medical advisory board.” Diagnosis, treatment and access to care are the biggest challenges still facing patients with GBS or CIDP, according to Estelle. “We help people sort out their care and deal with insurance coverages on a regular basis.”
The longtime resident of the Philadelphia area has a lighter side, too. When asked if she’s ever had a Philly cheesesteak, the Temple University alumna, former music teacher and school administrator is quick with a one-liner, “Is the pope Catholic?” She declares the Philly cheesesteak is the absolute best. “No matter where you go in the country they can’t replicate it. It has to be greasy and drippy.”
Asked for a final observation about her and the foundation’s work, Estelle turns serious again. “Our culture at the GBS/CIDP Foundation is based on the patient, and from this everything else flows.” Good advice, for anyone planning to start a patient support group.