ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-414-831-6879.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
1800 North Prospect Avenue, Suite 4B
Milwaukee, WI 53202

ALS Worldwide
November 09, 2016

Mindfulness: An Online Trial For ALS Patients

An online, mindfulness-based intervention for people with ALS and their closest relative

Surprisingly, few studies have explored the effects of psychological interventions on the quality of life of people with ALS and their families. A new study jointly conducted by researchers from Harvard University and Penn State Hershey Medical Center aims to investigate an innovative, online intervention for the promotion of quality of life (QOL) and well-being.

The intervention is based on the concept of mindfulness, which is a concept often associated with meditation. In this case, however, mindfulness will not be promoted with meditation practice, but through easily accessible cognitive exercises. Mindfulness, as studied by Dr. Ellen Langer at Harvard, who is the study principal investigator together with Dr. Zachary Simmons of Penn State, can be defined as a flexible state of mind resulting from the simple act of actively noticing new things. It has been positively associated with physical and psychological well-being, better recovery rates from disease or infections, pain reduction, QOL and, in ALS, slower disease progression. Data from a cohort study has shown that people with ALS who are more mindful have less loss of physical function after four months than those who scored lower on this trait.1 Furthermore, mindfulness predicts better QOL and lower levels of anxiety and depression, both in people with ALS and in their caregivers.2   

The experimental mindfulness intervention consists of a series of video lectures and a one to two-minute cognitive exercises, twice per day for five weeks, customized for people with ALS and their closest relatives. The aim is to help people avoid rigid thinking and improve resilience.   If you are interested in learning more and possibly participating, here is additional information:

"You are invited to join a research study jointly conducted by Harvard University and Penn State University, about an online mindfulness learning program.

If you chose to participate, and if you are eligible to participate, you will be randomly assigned to the begin the intervention group either right away or after 6 months. The intervention will last 5 weeks and will be conducted online, accessible from your laptop or from mobile devices. The requested time will approximately be 5 weeks. You will be assessed for psychological and clinical outcomes before and after the intervention, as well as after 3 and 6 months.

Your closest relative (e.g., your spouse, your son/daughter, one of your parents) is also invited to join the study, following a similar learning program (with same assessment points). Both you and your relatives will receive $50 each for your participation.

Should you be interested in joining the study, please contact Anne Morris at Hershey Medical Center - Penn State University, [email protected].

Thank you for your attention.

Ellen Langer, Ph.D.
Harvard University
Zachary Simmons, M.D.
Hershey Medical Center, Penn State University"

1Pagnini F, Phillips D, Bosma C, Reece A, Langer E. Mindfulness, physical impairment and psychological well-being in people with amyotrophic lateral sclerosis. Psychology & Health. 2015; 30:5: 503-517.

2Pagnini F, Phillips D, Bosma C, Reece A, Langer E. Mindfulness as a protective factor for the burden of caregivers of amyotrophic lateral sclerosis patients. Journal of Clinical Psychology. 2015; 72(1), 101-11.