A study of ALS patients and caregivers:
Educating for empowerment and quality of life

The diagnosis of Lou Gehrig’s Disease -- Amyotrophic Lateral Sclerosis (ALS) - is devastating.   A majority of patients and their caregivers gather additional information after receiving a diagnosis and as their disease progresses.  Very little information is available to assess or respond to the emotional, spiritual and social needs of patients and caregivers. Unfortunately, much of the information available furthers the sense of devastation.  For example, people can readily find videos of patients at the end of their struggles with ALS on the internet.  There is, however, little “official” information about building capacity to maintain quality of life while managing the disease or caring for the caregivers.

The University of St. Thomas research team seeks to build patient-centered models in the field of ALS in which patients and their caregivers are fully informed participants who are educated to collaborate with health care providers to determine courses of treatments that are specific to each patient’s goals and abilities.  In order for this to happen new resources need to be developed, both for people with ALS, their caregivers and health care providers.  The materials generated will be significantly nuanced, reflecting different manifestations of the disease, cognitive abilities, financial resources and access to services.  

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.