The ALS Association

ALS Ice Bucket Challenge Progress

New Grants Will Address Unmet Needs in ALS Care

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.

“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 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., 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., 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.

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

Read the press release.

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