On August 4, the MG Community lost a dedicated volunteer leader who brought MG patients together at the dawn of the internet. A former MGFA Board member, Stan Way was a visionary educator, community builder, and champion of the internet’s power to create connections.
In the early 1990s, Stan set up a bulletin board about myasthenia gravis on Prodigy, one of the first online content portals. He created a website, MGLinks, with resources on myasthenia gravis and a chatroom for patient support. He also ran an email listserv, which connected patients worldwide.
Donna Whittaker, who was diagnosed with MG as a child in 1957, describes those early days in her compilation of MG patient stories:
“I sat at the Windows 3.1 computer and waited as it connected to the Prodigy dial up online service. The phone line crackled. I waited patiently to log on and search. I wasn’t sure what I would find, but I needed to search.
‘Medical Support Bulletin Board. Wonder if it has anything about myasthenia gravis? I’ll look under the neurological conditions.’
I gasped when I found users discussing myasthenia gravis. Stanley Way lived in Maryland and moderated the bulletin board. Another myasthenic, Calvin, from the West Coast, posted how Imuran had helped him.
‘Imuran, that might help me get off prednisone.’
That night I read through the posts of Stan and Calvin. It was a relief to know that I was not alone with my myasthenia.”
Through his passion for helping others with MG, he connected with many patients, caregivers, and clinicians. Among these were Dr. James Howard at UNC Chapel Hill School of Medicine, who had set up his own informational website about MG.
Together with others, including Donna, they served as the MGFA’s Information Technology Committee in the 1990s. They brought MGFA into the technological age, forming an online chapter called MGNet – an early version of a virtual support group. Members from places like Portugal, Israel, Canada, and across the U.S. met in private chatrooms. MGNet also broadcast the MGFA annual meeting (for those with the bandwidth to view it!).
“I still remember the thrill of putting a face to a name when MGers waved hello in front of the camera. It was extraordinary,” says Monica Pires, who was an active member of MGNet and served on the chapter’s board of directors. “This is Stan's remarkable legacy to all of us. Creating platforms to educate people about myasthenia, organizing opportunities for support, and building a strong sense of community.”
Phyllis Davis, another person diagnosed with MG as a young adult, shared how much the MGNet chatroom meant to her and her mother (reposted from Stan’s memorial page):
Stanley Way made a tremendous impact on my life at a very early age. It was 1995 and I was 13 to be exact. With my new MG diagnosis, my mom went into research mode to learn as much as she could to not only help keep me out of the ICU, but to help her navigate our new normal. The problem was that in 1995 we didn’t have access to the information we have today – the internet was at its infancy and cellphones didn’t exist. In small town Indiana, we only had our local library’s Dewey Decimal System that had everything from A to Z, but no MG.
To try to learn more, my mom signed up for a painfully slow AOL dial-up internet service to see if this new World Wide Web held the secrets. I’ll never forget the night she found the community Stanley created the Myasthenia Gravis Prodigy chat room. It was a Saturday night and there was a live online chat. She immediately yelled at me to “Come see this. There are all these people with MG.” Even at 13, I could see in my mom an instant sense of relief that she wasn’t alone.
She found a break in the chat and started to type “Hi, my name is Jane. My 13-year-old daughter has MG and I’m looking for information on what to expect.” Almost immediately, Stanley Way welcomed my mom to the group. Stanley Way was a natural teacher, caregiver and friend, so of course he privately messaged her his number, email address, words of advice, and heartfelt offer to always be there for support.
From that night on, my mom became a regular on the Prodigy listserv and chat. She would print chats and articles from MGLinks and highlight items to discuss with my neurologist. We met happy and thriving adults that were diagnosed when they were children (like Donna Whittaker) who helped us see a rainbow in the middle of a rainstorm. When we got home from appointments or I was in the hospital, my mom would seek advice from the myasthenia pros (as she would call them). The Prodigy Listserv and MGLinks were her lifeline, sanity check, and comforting hug.
I’m not sure if it was my mom or my “sad story,” but over time Stanley and my mom started to become friends. He would call her to check in, call when I was in the hospital to see what he could do, sent cards and gifts, and would connect us to others. Without him I wouldn’t have been able to meet Donna and many others who guided my mom through all the new meds, talked her through the pros/cons of a thymectomy, and would show support and empathy during the rollercoasters of this disease.
I wish I was lucky enough to have met Stanely Way to thank him. I don’t think he will ever understand how he changed so many lives by bridging barriers and empowering people in a time where information was scarce. From my personal side, he helped a little farmgirl and her mom get through a very tough start to my long journey with Myasthenia Gravis. That Dewey Decimal System may never include MG, but thanks to Stanley, this community includes me.
With Stan’s enthusiastic leadership, MGFA created an online presence under the URL www.myasthenia.org. This, of course, is the MGFA’s online home to this day.
Stan was an accomplished NASA engineer, a dedicated family man, and active in his community beyond his considerable volunteer work in the MG Community. His son Tom has written a beautiful tribute to him, if you’d like to learn more about this humble man whose kindness and service to others touched so many lives.
You can read Stan’s MG story, in his own words, here.