There are many resources available to you
ALS Partnership w PAF (Patient Advocate Foundation)
For complex financial or insurance issues, the ALS Foundation pays them to support anyone anywhere in the country with ALS, including a special provision to ensure navigators from other ALS organizations can refer to them as well.
I AM ALS
A helpful list of all ALS organizations in the United States that provide ALS assistance. They are grouped by the type of services they offer and what areas they serve (i.e., caregivers, legal services, equipment, etc.)
Team Gleason
To improve the lives of people living with ALS by delivering innovative technology and equipment and providing and empowering an improved life experience.
CCALS – Compassionate Care ALS
A nonprofit organization with a mission to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities associated with the disease. The organization provides equipment, educational opportunities, insurance, Medicare assistance, guidance and awareness regarding living with ALS, and caregiving.
Live Like Lou
Their mission is to create and connect communities, stimulate emerging ALS research, and uniquely support families affected by Lou Gehrig’s disease.
Government Resources
Social Security Disability Insurance
You should apply once you become disabled. There is no waiting period if your disability results from amyotrophic lateral sclerosis (ALS).
IAMALS – Navigating the VA with ALS
If you are a veteran with ALS, it’s very important that you understand that your condition likely qualifies you for 100% disability and compensation from the VA, regardless of your branch of service or what job you did while in the military, as long as you have 90 continuous days of active duty.
Veterans Affairs – How to Apply for VA Healthcare
Support Groups – Virtual and In-Person
I AM ALS
To enroll in their weekly virtual support group, click the link above and register. Once registered, you will receive an email to join the call via Zoom.
Everything ALS
You can register and participate in both presentations and “Fireside Chats”. They also have a YouTube channel to watch past presentations.
Eye Gaze Support Group
Meets every Tuesday.
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