Penn Medicine: Respiratory Care for ALS: The North American ALSFAC We Care Online Cource for Clinicians 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 [...]

Hark-ALS:  A Nationwide Network of Compassionate and Financial Resources for Families Living with ALS 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 [...]

Compassionate Care ALS:  Sustainable Growth for ALS Care in the United States 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.

Massachusetts General Hospital: Expanding the ALS Parenting at a Challenging Time (ALS PACT) Program with Web-based Resources for Parents and Providers 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 [...]