Improving Quality of Life

ALS is currently a terminal disease and essential equipment is not often covered by insurance.  Those with ALS don’t have time to wait for the essentials they need in order for to live their best lives while battling the devastating effects of the disease.

From the development of the Parenting at a Challenging Time in ALS (PACT ALS) program, assisting families impacted by ALS; the ALS House Call Program, enabling those battling ALS to be seen at home; the MGH Research Access Nurse program, matching people with ALS with research opportunities; and our tight collaboration between our ALS clinics at MGH and UMass Memorial with CCALS, enabling those battling ALS to receive the essential equipment and resources they require; you can feel confident that your donations are impacting care and the quality of life for those battling the devastating effects of ALS.

ALS ONE’s intricate partnership with and financial support of Compassionate Care ALS (CCALS), helps cut red tape to ensure critical resources and essential equipment gets into the hands and homes of those battling ALS as quickly as possible.  The compassion and assistance provided by our partnership with CCALS is an unmatched resource that everyone affected by ALS deserves.  Learn more about CCALS HERE.

Communication between ALS clinics and the care community through our partnership with CCALS is stronger than ever, expanding the ability to care beyond the walls of hospitals and into patients’ homes.

CCALS referrals from MGH and the University of Massachusetts Memorial Medical Center have increased every year since 2016 as a result of the ALS ONE partnership between the organizations. This referral network provides the clinicians and caregivers who are on the front lines battling this disease with unprecedented access to help patients live their best lives. For example, when the MGH clinic learns that a patient is in distress, through ALS ONE the clinic is able to quickly connect with CCALS to conduct an in-home assessment to provide the equipment and technology necessary to expedite relief. In many cases, this care model has proven to be lifesaving.

We have created resource modules to help answer frequently asked questions relative to navigating the complexities of ALS. Each module is downloadable by clicking below:

Communication, Nutrition, Mobility Devices, Emergency Information, Hospice & Palliative Care, and Clinical Research.

ALS ONE’s dedicated ALS Research Access Nurse, Judith Carey, R.N., located at the MGH Healey Center for ALS, fields over 700 calls annually from patients worldwide to assist them in navigating clinical trials for which they may be eligible. Judy is a tremendously compassionate and knowledgeable resource who connects patients with clinical trial opportunities, either at MGH or elsewhere, which helps the patients, and helps the trials run faster. Patients and families can contact Judy to learn more about clinical trial opportunities by emailing her at: jcarey8@partners.org.

The ALS ONE care team provides in-service educational seminars to visiting nurses, hospice and palliative care clinicians, and home aides. These in-service programs arm caregivers with tools and resources that help them manage the physical, emotional, and spiritual complexities of the disease in the home setting. The better equipped caregivers are on how to properly care for those living with ALS, the better quality of life they will have. If you’d like to set up an in-service training at your hospital or institution, give us a call today!