Receiving a diagnosis of ALS is challenging and overwhelming. While no two people with ALS will experience the condition the same way, there is a great deal of collective knowledge as well as valuable resources available.
Need information or assistance? Call us at (800) 878-2062.
Our ALS Navigation Programs
Assistance to Newly Diagnosed
Information and assistance for people recently diagnosed with ALS or recently referred to The ALS Association.
Providing support to family members and caregivers through programs such as Care Connection, support groups, caregiver and survivor support, Quality of Life Grants and The Walk to Defeat ALS.
Research, Resources, Referrals, Education and Outreach
Linking families to appropriate resources to help them navigate the complex system of health, social, legal and financial services. Also, providing the most current resources, materials and speakers to families, healthcare professionals and the general public as well as working with all levels of government to draw awareness and resources.
Multidisciplinary care specifically for people with ALS.
Geographic Management and Urgent Needs
Consultation on area issues with a team of nurses and master’s- level social workers, as well as a variety of support groups. Also, helping families deal with urgent issues locally, including problems with Medicare, Medicaid, Social Security, rural resources, abuse, end-of life issues and more.
Consultation on the use of equipment, home adaptations and computer-enhanced communication devices, as well as an equipment loan pool.
Philips Respironics Recalls Models of Ventilators and Bi-Level Devices
We have been made aware of a recall notice from Philips Respironics for certain models of ventilators and bi-level devices. Recently, the U.S. Food and Drug Administration has expanded a recall to include certain Trilogy EVO ventilators. This is a class 1 recall, which is the most serious type of recall.
For more recall information from the FDA, click here.
Per the recommendations of the company and for the safety of those living with ALS on any of the affected devices, we are directing patients to contact their physician PRIOR to stopping any respiratory support, as well as contacting the manufacturer to determine if their device is one that is being recalled.
You can read the full recall notice here.