Until the recent past, virtually everyone with amyotrophic lateral sclerosis (ALS) lost their breath as the paralyzing disease progressed. Most have died after 2 to 5 years of respiratory failure. However, extraordinary recent advances in respiratory care now enable many people with ALS to breathe comfortably and securely with the assistance of noninvasive (mask) ventilation throughout the course of their disease. Expertly managed noninvasive ventilation also prolongs survival and improves quality of life. Today, noninvasive ventilation remains the only therapy for ALS that has been shown conclusively to improve survival beyond a few weeks.

The medical community has not kept up with the new respiratory care technologies. Many major metropolitan areas and most smaller communities lack pulmonary or sleep medicine specialists with expertise and special interest in the respiratory treatment of neuromuscular diseases. To address that gaping deficiency in ALS clinical care, ALS Finding a Cure is sponsoring the development of the first online master course for clinicians devoted specifically to ALS respiratory care. The course is to be directed by two senior leaders in the field, John Hansen-Flaschen MD at the University of Pennsylvania, and Philip Choi MD at the University of Michigan. Twenty multimedia lectures covering the entire spectrum of ALS respiratory care will be presented by experts drawn from across the United States and Canada. Online access to the course will be free and accessible to members of the public as well as health care professionals across North America and worldwide.

In 2009 I watched my dad slowly lose his ability to walk, talk, swallow and breathe before taking his last breath 18 months after being diagnosed with ALS (Lou Gehrig’s Disease). I’m one of 7 children and my dad was a veteran so we had all we needed to take care of him at home. Not long after my dad passed a good friend’s husband was diagnosed with ALS; by the time he passed away she was financially devastated. My first thought was, “How do people do this alone?” Taking care of an ALS patient is a 24/7 job. “Where do people turn that can’t afford home care or have to quit their jobs to take care of their loved ones?” When I looked, there were very few resources available for financial assistance and many only helped a specific geographical area. I decided what better way to honor my dad than by helping other families dealing with this horrible disease, especially those that had no family to support them. We would be their family.

Hark-ALS was formed in memory of my dad, Charlie “Hark” Dourney. To date we have raised $3 million to provide financial assistance to ALS patients and their families. ALS is often referred to as the “bankruptcy disease” as the cost of caring for an ALS patient at home can exceed $200,000 a year. Our goal is to ease the financial burden for the patient and his or her support system. We provide a myriad of resources including purchasing Hopemobiles© wheelchair accessible vans, securing medical equipment for patients not covered by insurance, providing financial assistance for household expenses and home modifications for wheelchair accessibility, paying travel expenses for ALS patients to visit family, helping families with children during the holidays and much more. We are one of the few organizations that does this across the country. For more information and to view our documentary, Hope on the Horizon, please visit www.hark-als.org.

Compassionate Care ALS (CCALS), a nonprofit located in Falmouth, Massachusetts, currently works with more than 860 ALS families in 42 states and multiple foreign countries.  Funding from ALSFAC WE CARE will allow CCALS to grow its staff to serve more ALS patients their families, communities, and healthcare providers.  We will provide resources including equipment, educational opportunities, Medicare/Medicaid assistance, communication assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited, all at no cost to families across the United States.

Many people coping with ALS live with, or care for, children or grandchildren. When confronted with a disease as difficult to navigate as ALS, many parents understandably struggle with knowing how best to support their children (or grandchildren) and accessing resources tailored to their needs. The ALS Parenting At a Challenging Time (ALS PACT) Program at Massachusetts General Hospital’s ALS Multidisciplinary Clinic has been designed to build on family strengths and help parents to support their children’s coping and resilience. With support from the ALS Finding a Cure WE CARE initiative, the Mass General ALS PACT providers will develop and promote widespread access to ALS-specific parenting resources.

At the Mass General multidisciplinary clinic, the ALS PACT Program has been collaborating with parents and grandparents to provide developmentally-attuned psycho-educational consults, focused on supporting children’s coping with all stages of an adult’s ALS. The team will now expand on this core commitment to care by developing an open-access, online library of written psycho-educational resources designed to help parents and grandparents recognize and address a range of children’s concerns related to a loved one’s ALS. These evidence-informed guidance materials will address how to support children from toddlers through young adults, across all stages of ALS. Additionally, the team will develop primers accompanying the core parent guidance materials for mental health clinicians and multidisciplinary ALS clinicians working with parents and grandparents with ALS. Materials will be made freely available in English and Spanish to patients and clinicians throughout the US and worldwide.