ALS & Genetics En españolDownload guide (PDF)ContentsWhat is a genetic counselor?Evidence-based consensus guidelines on genetic counseling and testing in ALSHow does genetic testing work?What are the results of genetic testing?What can I learn from genetic testing?How much does genetic testing …
ALS & Genetic Counseling and Testing for Family Members
ALS & Genetic Counseling and Testing for Family Members En españolDownload guide (PDF)ContentsALS & genetics for family membersWhat is a genetic counselor?How can I prepare for meeting with a genetic counselor?What can I learn from genetic testing?Emotions associated with genetic …
ALS & Breathing
ALS & Breathing En españolContentsHow ALS affects breathingSymptoms of respiratory muscle weaknessBreathing evaluationsOxygen and ALSMucusRunny nose, oral care and extra salivaAirway clearing devicesCold or respiratory virusesNon-invasive therapiesInvasive ventilationPreparations for power outagesTravelPalliative or hospice careLearn moreDownload guide (PDF)Watch webinarHelp me make …
ALS & Communication
ALS can weaken the muscles you use when speaking and breathing. This can lead to speech changes ranging from mild to severe. With today’s technology, you have options to communicate with the people who are most important to you.
ALS & Activities of Daily Living
ALS & Activities of Daily Living En españolContentsHow ALS may affect your daily activitiesTips for maintaining energyOccupational therapists and physical therapistsDifferent types of adaptive equipment for:Eating and drinkingDressingToiletingBathingOral hygieneGroomingRecreationDoors, keys and voice-activated house controlsBraces, splints and slingsSleepingLearn moreDownload guide (PDF)Watch …
If I choose to use NIV, when should I start?
There are benefits to using NIV early — as soon as you start feeling short of breath or having trouble breathing. Starting NIV early can improve your quality of life and help you live longer. If you start NIV early, you …
Letter: The Neuromuscular Disease Community Supports Swift Enactment of the FAA Reauthorization Act of 2024
Letter sent to Congress on May 3, 2024 Dear Speaker Johnson, Minority Leader Jeffries, Majority Leader Schumer, and Minority Leader McConnell; In service of the approximately 300,000 Americans living with a neuromuscular disease, for whom we collectively serve, the undersigned …
Introducing My ALS Decision Tool™ on Genetic Testing for People Living with ALS
Launching today, the new My ALS Decision Tool™ on Genetic Testing is the first tool of its kind in the U.S. that focuses on genetic testing for anyone with ALS. It is designed to help people learn more about treatment options, …
Do I need a feeding tube in the near future?
Are you having any of these symptoms? Having trouble chewing and swallowing Having trouble breathing while you’re eating or drinking Not feeling hungry or eating less than you used to Taking a long time to finish a meal Losing weight …
Can I choose not to use NIV?
The decision to use NIV is yours. But it’s important to understand how your ALS symptoms might change if you choose not to use NIV. ALS is a progressive disease. This means your ALS symptoms will get worse over time. …
