The ALS Association

ALS Ice Bucket Challenge Progress

New ALS Association-Funded Study Will Look at the Youth Caregiving Experience

May 12, 2015

Washington, D.C. (May 12, 2015) – The ALS Association is pleased to announce funding as a part of its Clinical Management Research Program, funding for a new study of young people who care for someone with ALS. The results of the study will be used to better understand the needs of youth caregivers and to design support services to address those needs.

ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects neurons (nerve cells) in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and no life-prolonging treatments for the disease. 

While the proportion of families with a teen or child caring for a person with ALS is unknown, it is clear that many ALS families include youth who may assume caregiver roles. The new study, led by Melinda Kavanaugh, Ph.D., Assistant Professor of Social Welfare at the University of Wisconsin in Milwaukee, will collect data on ALS families nationwide and conduct interviews with youth caregivers to better understand their experiences.

“With no national data on the number of families who rely on young carers in ALS, it is difficult to develop appropriate and targeted support services and programs,” Dr. Kavanaugh said. “Thus, identifying why families rely on young carers and assessing their experience will not only provide relevant data for the development of support programs and services, but also lay the groundwork for a longitudinal understanding of how caregiving influences the lives of young carers.” A better understanding of these issues will also identify areas for improvement in the quality of life for the family as a whole.

“This important study will help The ALS Association better meet the needs of ALS families,” said Kimberly Harding-Maginnis., Chief Care Services Officer. “It is a recognition that the entire family, including its younger members are affected by the disease, and may benefit from the services The ALS Association can offer.”

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig ’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at

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