Stanley Way impacted thousands of lives around the world in immeasurable ways and the myasthenia gravis community will be forever grateful.
By Donna Whittaker
With Phyllis Davis and Monica Pires
Our dear friend, Stanley Way, the Father of Myasthenia on the Internet has passed away. He had the wisdom and foresight in the early 1990's on the old Prodigy Online Service to establish a community to share myasthenia gravis information and to support each other.
I will never forget the night I found him on a Prodigy Medical Support Board for myasthenia as I was going through a rough period in my life. That day I had attended the funeral of Myasthenia Gravis Association Board Member Richard (Dick) Norman in Kansas City. I was feeling down because Dick was one of first people with myasthenia gravis I had met in person.
I was originally diagnosed as a young farmgirl in 1957 and I didn’t meet another person with myasthenia until 1977. That’s a long time to feel alone.
Beyond the Bulletin Board Stan formed a webpage of links to Myasthenia information called MG links, live chat groups for patients, an email listserv with thousands of participants all over the world. Stan Way along with Dr. James Howard established the Myasthenia Gravis Foundation of America website at myasthenia. org. Stan encouraged me to do webpages in the late 1990s, host weekday chats, monitor the email listserv, and share internet information at national meetings.
Donna Whittaker, Laurie and Stan Way
Two people have written tributes to Stan.
From teenager to adult Phyllis expresses how Stanley Way enriched her life.
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 overtime 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 that 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 Stanley Way to thank him. I don’t think he would 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.
Stanley Way inspired her to say “Yes!”
My name is Monica, I'm Portuguese and I have Myasthenia Gravis (MG).
Stan helped change the way I looked at life with Myasthenia. I was no longer alone. I became part of a community.
Let me tell you how it all started.
An MG-friend sent me a magazine that mentioned an MG mailing list. It was owned by a myasthenic called Stanley Way. There, no question was too silly. All answers were supportive. I jumped right in.
After a while, Stan asked me if to be the contact person for new members from outside the States. My job would be to send welcome emails and answer questions regarding the mailing list. I said yes!
Whenever I had any doubts, Stan was always a discreet and reassuring presence while allowing me to add my personal touch to this role. But the mailing list was just the beginning.
MGnet followed next. And what a wonderful adventure it became.
Stan was at the forefront of this extraordinary new idea - to create an online Chapter of the Myasthenia Gravis Foundation of America (MGFA). This Chapter would welcome people from all over the world. I was asked to serve on the Board of Directors. And I said yes!
Stan, Donna, Irv, Dale, Betty, Avi, Kelly, Elaine, Old Jack, Amy, and many more, became the building blocks of this remarkable project. MGnet grew quickly. We hosted support meetings, different topics each week, and several guest speakers.
Stan prompted us to believe and to make it happen.
Then came the annual MGFA meetings. MGnet was there. The talks were broadcast online and viewed by people all over the world. I still remember the thrill of putting a face to a name when MGers waved hello in front of the camera. It was extraordinary.
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.
Stan continues to inspire my steps online.
When I was asked to first be a moderator and then one of the administrators of the online group for Portuguese-speaking myasthenics from all over the world, I said yes!
Dear Stan, I still say yes because of your generosity so many years ago! Thank you.
Monica accepted a Volunteer of the Year Award at an MGFA Annual Meeting
The entire audience was awed when they heard Monica’s voice accepting her Award.
They were speechless, gasping, amazed….an awesome memory.
MGnet Chapter of Myasthenia Gravis Foundation of America
Board of Directors
From the US and Canada: Dale Wurtenberger, Stanley Way, Carol Kennedy, Donna Whittaker, Kelly Carson,
MGFA Executive Director, Irv Beck, Tim Scott, Absent Monica Pires
Stan expanded my world far beyond my small-town upbringing with friends and experiences beyond any dreams. Many of us had the pleasure of meeting Stan and his wife Laurie at numerous MGFA Annual Meetings including those held at Crown Center in Kansas City.
Stan was an accomplished NASA employee, a dedicated family man, and active in his community beyond his myasthenia involvement.
Stan was a humble gracious person. Stan earned his angel wings. May he rest in peace.
His son Tom Way shared the following memorial piece in his father’s memory.