The AANEM’s Public Recognition Award honors someone who has made extraordinary contributions toward increasing public awareness of muscle and nerve disorders. Estelle Benson, co-founder of GBS|CIDP Foundation International, a foundation supporting individuals and families affected by Guillain-Barre syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP), is the AANEM's 2020 recipient of the award.
In 1979, when Benson’s husband was diagnosed with GBS, she vowed that she would do something about the lack of information and support they faced. Shortly after, she 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 45,000 members with 190 chapters in 46 countries. Benson is also the recipient of the 2015 President’s Award from Patient Services Inc., and the 2018 Honoree for the Abbey S. Meyers Leadership Award from the National Organization for Rare Disorders.
“From the very start of the foundation, the patient has always come first. To this day, over 30 years later, we never lose sight of what the goal is. We never lose sight of the patient,” she said.
Benson believes organizations like the AANEM have been great for the advancement of NM medicine.
“Our foundation is neuromuscular, we focus on movement disorders. So people are diagnosed through EMG and EDX testing. Our medical advisory board has always leaned on AANEM’s expertise in diagnosis,” she said.
She recalled the early days, when there was not much information out there about GBS or CIDP.
“When my husband was diagnosed, we were stricken. I’d never heard of it, and nobody I knew had ever heard of GBS. There was no treatment, and for pain, there was nothing they could give him so they gave him wine. He was the only one in the ICU that had a bottle of wine,” Benson recalled with a laugh. “Now, there are all kinds of treatments. We vowed that if he lived through this, we were going to do something about it. We kept our promise and sent out letters to all the hospitals in Philadelphia, asking people to join the cause. And it just started to grow by word of mouth.”
At that point, Benson left her teaching job to work full time on the foundation. She believes that the foundation’s patient-focused approach has helped with its expansion across the globe.
“I’m so proud of what we’ve accomplished. When we started I just thought I was doing a good deed, but then I realized how much need there was. Dr. Arthur Asbury (Emeritus Professor of Neurology at Penn’s Perelman School of Medicine) was the one who answered my letters. He felt that our cause was the piece of the puzzle missing in caring for these patients,” Benson said.
She says the GBS|CIDP International’s annual symposium feels like a wedding. People come together and catch up, hug each other, and provide a sense of community for everyone who suffers from these diseases.
“That gives them that feeling of confidence and assurance that they’re not alone,” she said.
Benson will turn 90 years old in December. She likes to joke about how she’s retired about 7 times now, and yet still has been running Zoom meetings for the foundation in recent months.
“I was going in to the office every day until last year. I decided to cut down a bit,” she said.
She hopes young people will find something they’re passionate about and put their time into cultivating those passions, especially if it’s a good cause.
“Focus on a deliberate goal. What do you want to do? Make sure you never forget the patient. It can’t be an ego trip. Do things deliberately and carefully – create a culture where people have confidence in you,” said Benson.
Benson graduated from Temple University in Philadelphia with a BS degree in Education. A member of Pi Mu Honor Society, she also received the American Association of University Women Award for Outstanding Service to Temple. In 1978, Estelle earned a Master of Arts degree in School Administration from Villanova University. She received the “Certificate of Honor” award from Temple University in 2000 and the Founder’s Award from the Graduate Alumni Society of the Arts and Sciences at Villanova University in 2003. After teaching for over three decades, Estelle retired as a school administrator from the School District of Philadelphia.
To learn more about GBS|CIDP International, visit www.gbs-cidp.org.