Contributed by Maya Zimmerman (written on 12/26/2010):
Today marks the 4th anniversary of Vincent Schiavelli’s death. For those of you who never had the pleasure of meeting him, he was extremely active in the Marfan community and particularly loved working with the teens. He was also a renowned character actor and appeared in such movies as One Flew Over the Cuckoo’s Nest and Tomorrow Never Dies.
I remember when I first met him. I was 14 and it was my first conference. Friday night all the teens (all 15 of us) were supposed to go to a Salvador Dali exhibit. I didn’t feel well (and was mostly just nervous…I’d never been around so many other Marfs!) and decided not to go. Vincent offered to take me in a taxi so I wouldn’t have to walk. I was really taken aback because I’d never had anyone offer a kindness like that to me before, to be totally willing to accommodate Marfan. But, the nerves won out and I said no thanks. I think not taking that taxi ride may be my one life regret, lol. Anyway, for the teens he was a gift: both serious and irreverent and he pushed us to view ourselves as capable. Whenever I see him in Tomorrow Never Dies I smile and I wish he was still here to see how much the teen program has grown.