Bill Feinstein wasn’t famous. But he was one of those big heroes within the Marfan community. He was a regular poster on Marfan List, and a valuable resource. When I first “met” him online several years ago, he had already had several aortic graft surgeries, and had small dissections in the remainder of his natural aorta. Bill had been through it all, and was in a situation where further heart/aortic surgery could result in almost guaranteed death or paralysis. Bill passed away on Sept. 14, 2008, during surgery.
My parents and I knew Wendy Weiss back in the 1980s. Here’s an article written about her in 1986. She’s still kicking. I went to an NMF conference with my parents in 1986 or 87 and heard Wendy speak: “I get so sick of having to get up off the operating table and tell the doctors what to do!”
Marshall Weiner passed away many years ago–sorry to say I can’t remember when. I met him at the above conference, where he gave me a free hat. He was in charge of selling merchandise at a table. They had buttons with a sign saying, “FREE Take one.” I assumed that applied to everything on the table, so I grabbed a National Marfan Foundation baseball cap and walked off with it. My parents scolded me, but Marshall laughed and said the sign was confusing and let me keep it.