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A30 Living with HD: the physician’s role
  1. Martha A Nance
  1. Department of Neurology, Hennepin County Medical Centre, Struthers Parkinson’s Centre, USA


The physician who specialises in HD has a unique opportunity to participate in the lives of some remarkable families over generations. If one takes the role of the physician beyond that of “medication prescriber” to “facilitator of optimal outcomes”, amazing things can happen. We will first tell some inspiring (short) stories from the Minnesota HD community (skydiving with HD; the Hoopathon that raised $750,000; high school hockey buddies; marathoning past HD; group homes for HD; the thousand-dollar mural; and more). We will close with simple suggestions for doctors to help them encourage these kinds of things to happen: 1. Give a name to your HD clinic or program; 2. Say “yes” to any and all ideas that patients or families have; and 3. Talk to the children, as they represent the future.

  • Quality of life
  • management

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