If you or your loved one have been diagnosed with ALS, also known as Lou Gehrig’s Disease, you need to focus on the physical and emotional health of the patient and the caregivers. After the ALS diagnosis, the journey ahead may be overwhelming. You may have questions such as:
- What is ALS?
- Why did it happen to me?
- What is going to happen?
- What should my family do?
These and many other questions might be racing through your mind.
Note: If you have ALS, you may qualify to sell your life insurance policy for a lump-sum cash payment through a viatical settlement. The money is almost always tax-free and you can spend it any way you want, whether on medical bills, a dream vacation, or however you see fit.
Here’s a list of ALS support groups that can offer some answers, support, understanding, and hope that you and your caregivers need now:
The ALS Association Support Groups
The ALS Association maintains a very helpful, long-running list of ALS support groups. We have included several state chapters below, to help you get connected with the ALS support group nearest you.
Don’t see your state in the list above? Don’t worry! There are support groups offered in nearly every state. With this helpful online tool, you can filter ALS support groups by state, to find the one nearest you.
Other Support Groups
Patients Like Me and ALS Forums are two other great resources that provide virtual support and community involvement to those diagnosed with ALS.
Patients Like Me runs an ALS specific online forum, boasting over 170,000 members. The purpose of the forum is to allow patients with ALS to communicate virtually with one another in a supportive, stress-free environment.
Another online community dedicated to bringing together those suffering from ALS is ALS Forums. Through their website, members can join and participate in various online forums, specifically dedicated to ALS topics. Here, members are able to share their experiences, ask and answer questions, and help one another on their ALS journeys. Membership is free and community support is plentiful.
The National ALS Registry
This national registry is maintained by the Centers for Disease Control and Prevention (CDC). From the CDC website: “The National ALS Registry is a program to collect and analyze data about persons living with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to take part. Researchers can use Registry data to look for disease pattern changes over time.”
You can share information about the disease by completing surveys to help the ALS community better understand who gets it and what factors influence it. Individuals with ALS may be informed about clinical trials and study research happening throughout the country.
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