You Are Not Alone
Receiving a diagnosis of ALS is challenging and overwhelming. There is so much to know, a great deal to consider, and typically a host of questions. While no two people with ALS are alike or will experience the condition the same way, there is a great deal of collective knowledge and wisdom available from health care providers, people with ALS, family members and caregivers.
Browse the links to the left and below to find more information and answers to many questions, as well as a plethora of additional resources to assist you.
National ALS Registry
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases throughout the United States. Most important, the Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease and how it can be treated. Please help us by enrolling today.
It is also important to learn about your insurance coverage, healthcare facilities and how to obtain support for yourself and your family. This site provides a list of ALS Association Chapter-run support groups and affiliated found here.
Need more help?
Questions may also be answered by contacting our chapter.
I Have ALS. Now What?
A short set of essays written by someone with ALS for others who have just been diagnosed with the disease. It tries to anticipate the most common issues faced by persons living with ALS in the first weeks and months following the diagnosis, and point you to helpful sources of support.
Recommended Steps after Diagnosis
- Recognize that ALS is bigger than any one person or family. You will need help.
There are agencies and organizations out there whose specific purpose is
to help. Find them and take advantage of what they can offer.
- ALS is difficult to diagnose. If you were not diagnosed by a neurologist
specializing in neuromuscular diseases, request a referral for a
confirmation of the diagnosis.
- Request an appointment with your local ALSA Certified Center or ALS Clinic.
- Connect with your local ALS Association (NC 877-568-4347) Chapter and/or The National ALS Association (800-782-4747) and request information about services and publications available.
- Contact your medical insurance provider and request that you be assigned a case manager to be your primary point of contact.
- Contact an attorney who specializes in elder care law and make an appointment to discuss legal and financial planning recommendations.
- If you served in the military, it is crucial that you contact the Department of Veteran Affairs (800-827-1000) regarding eligibility for health, vocational rehabilitation and disability programs and services. Substantial benefits are now available for those with an ALS diagnosis.
- If you are employed, contact your state Vocational Rehabilitation Division and request information about available services.