ALS family and youth national study

What is the ALS family and youth study?

  1. Online survey with adults living with ALS across the United States
  2. Phone interviews with youth ages 8-18, who help care for or assist the person with ALS (this can be a parent, grandparent, Aunt, Uncle).

The study was completed in early 2017

Facts about the study

  • Over 100 families participated
  • in these families, 38 youth completed interviews about their experiences being a caregiver to a family with member with ALS