Estelle Benson, a retired school administrator, retired from her volunteer job as co-founder and Executive Director of the GBS/CIDP International Foundation. At her farewell on November 5, 2010 letters were read from Mayor Nutter of Philadelphia, Governor Rendell of Pennsylvania, and President Obama of the United States of America honoring the thirty years of unpaid dedicated work on behalf of individuals with a rare disorder.
In 1979 Estelle's husband, Robert Benson, was struck with a rapidly paralyzing disorder, Guillain-Barre' Syndrome. Fears arose as to whether he would survive and what would be his quality of life if he did. At that time few professionals knew how to diagnose and treat it. Little research was being done on the disorder because of its rarity and lack of funds. There was no support group for caregivers. There was little, if any, literature on it at libraries (before the internet days) and it was barely mentioned in medical schools. As Robert Benson began recovering, Estelle and he determined to do something about the lack of information and lack of patient, family, and professional resources. They talked to professionals and friends about the problem and with a small cohort of people around a dining room table determined to make a difference.
Today there is the GBS/CIPD International Foundation with 174 chapters in 30 countries.There are books, articles, brochures, website, and educational events for professionals, patients, and their caregivers. There are visits to new patients by surviving and thriving former patients who have become liaisons. There is year round fund raising so that grants can be made available to help fund the badly needed research to improve timely diagnosis and interdisciplinary treatment.
Estelle and her husband were honored at its Eleventh International Symposium at Valley Forge with worldwide participants and the Quaker City String Band. The board of directors wrote in the program:
Sabriye Tenberken, a social worker and co-founder of Braille without Borders, has been featured in documentaries such as BlindSight, authored books My Path to Tibet and The Seventh Year-From Tibet to India, and been honored by dignitaries as well as an appearance on The Oprah Winfrey Show as one of 8 Women Oprah Wants You to Know.
Sabriye Tenberken is blind and as a teen from West Germany became a foreign exchange student in the International Program at the Overbrook School for the Blind in Philadelphia, Pennsylvania. During that time she shared a room with an Asian exchange student and became interested in the Asian culture.
Back in Germany while attending Bonn University, she decided to study the Tibetan language. The course, however, had never been taken by a blind person and there was no brailled version of the language available to aid her in her studies. Therefore, she created a braille script for the Tibetan language. An eminent Tibetan scholar reviewed the script and found it understandable and easy to learn. He suggested to Sabriye, still a student herself, that she let blind Tibetans make use of it as blind children there had no access to education.
In 1997 she travelled to Tibet to investigate further the need and how best to help address that need. In 1998 a Dutch engineer, Paul Kronenberg with community development experience, joined her on a return trip to launch a program to address this need.
Click here to read details about the steps they followed to create the first institute for the blind with training of teachers in Tibet and vocational training components to assure graduates of the program could get jobs.
As a demonstration of success Sabriye Tenberken and six of her former blind students are featured in the documentary BlindSight. The film shows them climbing the Lhakpa Ri, a 23,000 feet high peak next to Mount Everest. They were joined by world class blind mountain climber, Erik Weihenmayer. They have come along way from being denied an education and a place in society along side their sighted peers.
The following stories are of individuals who identified a need and addressed the need. The first stories are ones the webmaster has known personally. Two were older adults and one just entering adulthood when they set out to make a difference in this world. None sought fame or wealth but passionately set out to help others improve the quality of their lives. The secret to their success is that when obstacles arose they did not give up but maintained their commitments to serving others.
I met Judith Ramsey, a social worker, at a long term care facility on a Friday and she died the next Tuesday. Within those four days, however, she impacted my life. She listened calmly and patiently to my concerns and that of an elderly patient, a friend of mine. She helped turn around the patient's thinking about returning home prematurely before he had regained his strength and before the home could be readied for him in terms of a safe and healthy environment for independent living. Click the red button for the rest of this story.