The ALS Residence Initiative
The ALS Living Fund works to improve the quality of life for people with Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig's Disease, through charitable grants.
Initiative One: The ALS Living Center
ALS is considered fatal, but this is not necessarily so for those who accept the terms imposed by ALS for continued life, including:
- Increasing dependence on others as paralysis progresses
- Use of communication aids as the ability to speak is lost
- Placement of a feeding tube as the ability to swallow is lost
- Respiratory support, progressing to tracheotomy and ventilator-dependence as the ability to breathe is lost
We look forward to the day when a cure is found and an ALS Living Center is no longer needed. Until then, helping ALS patients live full and enjoyable lives is the best way to truly make a difference for those who must face this disease today. It is simply the right thing to do.
Initiative Two: Respiratory Care Services
For those with ALS who live with a tracheostomy and mechanical ventilation, daily ALS-specific respiratory care provided by a qualified specialist is required to keep the lungs clear. Such care improves both quality of life and longevity by dramatically reducing the incidence of pneumonia and consequent hospitalization.
While Medicare/Medicaid and most insurance companies will pay for the equipment, at-home respiratory care by a qualified specialist is rarely covered, placing a very heavy financial burden on the patient and family.
Our Respiratory Care Initiative will help patients pay for at-home respiratory care from approved providers when such care is not covered. We will also work with insurance payers, including Medicare and Medicaid, to help them understand the need for at-home respiratory care and the financial benefit of covering such services.