Research Seeks to Understand Stigma and Quality of Life in ALS


People living with ALS and adult caregivers can help researchers learn more about stigma and quality of life in ALS.

Dr. Melinda S. Kavanaugh, a professor at the University of Wisconsin-Milwaukee in the United States, and Marion Sommers-Spijkerman, Postdoctoral fellow at UMC Utrecht in the Netherlands, are leading a research study into stigma, which includes things like negative attitudes or untrue beliefs about the disease, and impact on quality of life.

The research is supported by The ALS Association.

They are looking for people, living anywhere in the world, who are:

  1. Adults diagnosed with ALS/MND – another adult may complete the survey if you are physically unable to
  2. Adult caregivers - anyone who helps care for or assist someone with ALS/MND
  3. Must be at least 18 years of age and older
  4. Must be able to read and understand English

Participation in this research involves:

  • completing an online survey that asks about your experiences either living with ALS/MND


  • your experiences helping a family member with ALS/MND.

Your participation is completely voluntary (meaning you have a choice in whether to join), and your responses are anonymous and confidential. The survey will take about 20-30 minutes to complete.

Your feedback will help make recommendations for future programs targeting stigma in ALS.

If you would like to participate in this research survey, click here.