WXXI AM News

Connections: Understanding muscular dystrophy

Jan 24, 2017

What would change if you found out, overnight, that your life expectancy had doubled? Maybe a lot. Maybe nothing. But for Gabe Weil, it changed everything: he had muscular dystrophy, and understood what that meant. A film called Gabe tells his remarkable story -- a story of confronting actual life-and-death choices on a daily basis. For Gabe, that meant deciding whether to eat real food or get a G-tube. It meant travel and risks that could end his life.

Our Dialogue on Disability series continues with a preview of the film, which is showing this week at the Little Theatre, and a conversation with Jonathan Piacentino, who is navigating life with his own challenges and difficult decisions. Our guests:

  • Jonathan Piacentino, graduate of Nazareth College, and muscular dystrophy awareness advocate
  • Heidi Schuster, supervisor of the adult day habilitation program at CP Rochester

This program is presented as part of Dialogue on Disability Week – a partnership between WXXI and Al Sigl Community of Agencies – in conjunction with the Herman and Margaret Schwartz Community Series. Dialogue on Disability is supported in part by The Golisano Foundation with additional support from the Fred L. Emerson Foundation.