IT ALL STARTED AT A DINING ROOM TABLE
The GBS/CIDP Foundation International, a non-profit 501(c)(3) organization, was founded by Estelle and Robert Benson in 1980.
Down But Not Out
Robert (Bob) Benson was struck with GBS in November of 1979. An active, athletic man, Bob had a bad cold one week and complete paralysis the next. Treatment at the time was limited, and Bob’s GBS ran its course with medical supervision and steroids (medicine that’s no longer recommended). During the month spent in ICU, Bob and his wife, Estelle, were alone with their fears and questions. They vowed that if Bob survived this, they would begin a support group for other GBS patients and their families so that no one would have to go through this alone.
Bob did survive. It took four months in a rehab facility for him to learn to walk again plus additional therapy to regain fine motor control. He couldn’t walk backwards for five years. Yet Bob eventually returned to playing tennis and riding a bicycle, activities he enjoyed on a regular basis before GBS. In May 2012 Bob died from cancer. His memory lives on.
First There Were Eight
In the fall of 1980, the GBS/CIDP International Foundation began as the Guillain-Barré Support Group. The first meeting consisted of eight people in the Benson’s dining room.
By the middle of 1981 there were 25 members, brought together by referrals from 32 Philadelphia hospitals and other referrals. The group was the first such group registered with the National Health Information Clearinghouse. Soon phone calls from all over the United States were coming into the GBS hotline.
The group grew to 100 members by 1983 with outreach in other states. They were receiving up to 20 letters a day from patients and families. A medical advisory board, headed by Dr. Arthur K. Asbury, was added for additional support.
It was a letter to Ann Landers published in 1985 that resulted in over 1500 letters to the Foundation and a surge in membership.
Keep A Good Thing Going
Today the Foundation has become an international organization of 30,000 members with 182 chapters in 33 countries, all of them dedicated to providing support and assistance to GBS/CIDP patients and their families.
The Foundation continues to be funded by contributions from individuals who have been personally touched by GBS as well as by corporate donors. If you are interested in making a contribution to The Robert and Estelle Benson Fellowship in Neuromuscular Neurology, please call 610-667-0131. It has been acclaimed as one of the few organizations in which 100% of donations are used for the purpose for which they are collected, and acknowledged by the Voluntary Health Agency Community as being among the top charities in the field.