Resources

There are many useful resources for more information and support. Here we list some of the best and most extensive.

Practical Guides

Everyday Life with ALS: A Practical Guide from the Muscular Dystrophy Association
This online book contains a host of practical information for mobility, communication, respiratory issues, and other concerns in the disease. MDA also provides many other important resources and services to ALS patients and families.

Living with ALS: Manuals from The ALS Association
These manuals provide useful information on managing symptoms, mobility, adapting to breathing changes, and other issues, as well as an overview of the ALS disease process. The ALS Association also maintains additional resources for people with ALS and their families.

 

Learn More About ALS

ALSUntangled
ALSUntangled helps ALS patients understand the claims made for alternative and off-label ALS treatments. The site encourages participation, and offers authoritative reviews of a wide variety of alternative treatments.

The ALS Therapy Development Institute
This research institute devoted to ALS maintains an active news update service, especially on clinical trial results and ALS-relevant news from pharmaceutical companies.

AAN Practice Guidelines
The American Academy of Neurology provides practice guidelines for physicians, providing evidence-based recommendations on the care of ALS patients.

 

Join an ALS Registry

Centers for Disease Control ALS Registry
The National ALS Registry is a congressionally mandated registry for persons in the U.S. with ALS. It is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes. By joining the registry, you can contribute to research to fight ALS. Registration is free, entirely confidential, and carries no obligation.

fALS Connect
fALS Connect aims to connect fALS families with scientists who are engaged in familial ALS research. The goal of the registry is to accelerate progress towards finding a cure for this disease. We encourage both affected individuals and unaffected family members to sign up for the registry.

 

Find a Support Group

The Kessenich Family MDA ALS Support Group meets regularly for patients and families living with ALS. Updates of events are listed in the News & Events section of our website.  For details and to find the date of the next meeting contact:
Ginna Gonzalez
Phone: (305) 243-7400
Email:

There are more ALS support groups all across Florida. You can find one in your area by checking with The ALS Association (http://webfl.alsa.org/site/PageNavigator/FL_8_SupportGroups.html) or The Muscular Dystrophy Association (http://mda.org/locate/state/fl)

 

Plan Your Finances

Financial planning for ALS care is complex, and may include Medicaid, Medicare, Social Security, and your own health insurance. There is no substitute for consultation with an expert who understands current disability and long-term care law. Planning should begin right away. The ALS Association has a good overview of the issues to get you started at http://www.alsa.org/als-care/resources/publications-videos/factsheets/professionals-guide-govt-benefits.html

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