Why This Study?

The vast majority of research resources are currently directed to finding a cure for ALS.  From drug trials to genome studies, millions of dollars are at work to understand the cause and cure of ALS.

This project is about a different set of issues including:

  • How disability is understood and constructed
  • How a disease impacts the lives of individuals, families, colleagues and systems
  • How people who have been diagnosed with ALS and those they love can address issues of quality of life and self-management skills for themselves
  • Discovering information and tools that would be more helpful to people living with ALS than what are currently available


Materials that are available and have been developed for ALS patients and caregivers reflect a model of thinking and underlying assumptions that often miss the needs and interests of people with ALS (PALS) and their caregivers (CALS) as shown by the concerns and questions brought to online forums.  This project seeks to develop educational materials and experiences, particularly decision support tools, that address the needs of all the interest groups especially, the PALS and CALS.  

Bringing the best of a highly rated School of Education and Graduate School of Professional Psychology to this task as well as the full investment of a Twin Cities ALS Clinic of Excellence offers great potential for translating the research findings into resources that will improve patient centered care.  The fact that the Clinic of Excellence is situated in a hospital already committed to patient-centered care furthers the likelihood of the decision-making tools developed through this study being tested, revised and well used.

For more information

contact us at alsstudy@stthomas.edu

Thank you for choosing to support this fund. At this time, gifts of any size will be doubled, thanks to a $20 million matching fund created by the university's Board of Trustees to support the Opening Doors capital campaign. This opportunity remains available until the end of the campaign (Oct. 17) or until the matching fund is exhausted – whichever comes first.

For a gift of $1,000 or more, the match will go to the ALS Fund if you so choose. For a gift of under $1,000, the trustees will make a gift of equal size to the university's scholarship endowment. All eligible gifts will be matched when the matching funds are received by St. Thomas. Thank you for your support!

100% of donations will be used for this research project. 

 All donations are tax-deductible.