The ALS Association

ALS Ice Bucket Challenge Progress
Brian Frederick
The ALS Association



New ALS Association Grants Will Address Unmet Needs in ALS Care

Washington, D.C. (December 17, 2014) —The ALS Association is pleased to announce the awarding of funds for three new grants that address unmet needs in the clinical management of ALS. The research funded by these grants, which will benefit both people with ALS and their caregivers, are in the areas of reducing unwanted weight loss in people with ALS, using mindfulness techniques to improve quality of life for both those with ALS and their caregivers, and assessing the extra burden on the caregiver when their loved one with ALS has cognitive and behavioral impairments.

ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s Disease, 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.

The new grants will fund the following research projects:

--Weight loss is a concern in the disease, yet access to in-person nutrition counseling may be limited. Anne Marie Wills, M.D., Massachusetts General Hospital in Boston, Jane Hubbard, and Eric Macklin, Ph.D., at Massachusetts General Hospital in Boston, will enroll more than 100 people with ALS to study whether a “telemedicine” intervention by a nutrition counselor, rather than an in-person clinic visit, is effective at preventing unwanted weight loss.

--“Mindfulness,” which can be defined as a flexible state of mind resulting from the simple act of actively noticing new things, has been found to improve health in people with chronic medical conditions. Ellen Langer, Ph.D., at Harvard Medical School in Boston, and Zachary Simmons, M.D., at Penn State Hershey Medical Center in Hershey, Pennsylvania, will explore whether mindfulness training can improve quality of life in ALS by comparing outcomes in people with ALS plus their caregivers, who receive training to a similar group who do not.

--Cognitive or behavioral changes affect a large proportion of people with ALS at some point in the disease course. These changes add significantly to the burden on the caregiver. In this study, Terry Heiman-Patterson, M.D., at Drexel University in Philadelphia, along with Merit Cudkowicz, M.D., and Bradford Dickerson, M.D., of Massachusetts General Hospital, will characterize the relationship of ALS caregiver burden to cognitive and behavioral impairment. They will also develop and perform a feasibility study of an individualized intervention to reduce caregiver burden in such cases.

“These important studies will help develop interventions that may offer real benefits to people living with ALS and their caregivers,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The Association. “Treatment of ALS requires many different kinds of approaches, and these studies provide the opportunity to develop yet more strategies to meet the needs of those affected by the disease.”

The Association will provide enrollment details and center locations, once that information becomes available.

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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