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About ALS

INFORMATION CAN HELP

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease. From whom it affects to how it progresses, it’s a complex disease and there is no cure.

ALS affects as many as

30,000

adults in the  
United States alone

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ALS affects as many as 30,000 adults in the United States alone

UNDERSTANDING THIS COMPLEX DISEASE

Denise, living with ALS, doing her own hair

What is the ALSFRS-R?

You may have come across the term ALSFRS-R while reading about ALS. ALSFRS-R stands for Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised. This is a questionnaire-based scale that measures an individual’s functional ability to perform activities of daily living. It’s considered to be the gold standard and widely used in ALS clinical trials for measuring ALS progression.

It’s designed to measure 4 different categories:

  • Respiratory, which includes measurements related to breathing
  • Bulbar, which is related to things like speech and swallowing
  • Gross motor, which measures things like walking
  • Fine motor, which includes activities like using utensils, getting dressed, and handwriting

What do the points mean?

The scale starts at 48 points, which represents a person who is functioning normally. You lose points on the scale when you lose function based on how ALS is progressing.

The more points you have, the better you may function independently. That’s why every point matters.

Mark, living with ALS, putting on sweatshirt

Managing ALS

Because ALS is such a complex disease, it can be very difficult to manage. After all, ALS is not just a physical disease; there are also emotional and psychological effects.

Fortunately, specialized ALS clinics can provide multidisciplinary care and, together with therapies, they can form a treatment plan to help manage ALS.

MORE PLACES
TO TURN TO FOR INFORMATION AND SUPPORT

ALS researchers and advocates are continuing to fight against ALS. Meanwhile, increased education and mobilization efforts are leading to significant changes and advancements throughout the ALS community.

These independent advocacy and support organizations not only serve as an important source of information, they’re also a great way to find community support.

Of course, this list is not all-inclusive. There are many other regional/local support programs throughout the United States.

Doctor Discussion Guide Resource

RECENTLY DIAGNOSED WITH ALS?

This doctor discussion guide can help you pinpoint questions to ask about ALS and your treatment plan.

Doctor Discussion Guide Resource
Doctor Discussion Guide
Denise, living with ALS

LET’S TAKE 
THIS ON

Learn how RELYVRIO® can help

Denise, living with ALS

Denise is a former golfer as well as a former volleyball player and high school coach. Her husband, Jim, and all those who know her talk about her unique and infectious laugh. She’s a positive force that brightens every room she enters. It’s who she’s always been, and she’s bringing that spirit to her fight with ALS.

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Amylyx Care Team (ACT)™ Support Program Logo

The Amylyx Care Team (ACT)™ Provides Support You Can Count On

The ACT Support Program is designed to help provide you with support as you start and continue on your RELYVRIO prescription that your doctor has prescribed.

If your doctor has decided that RELYVRIO is right for you, that’s when ACT comes in. ACT is a personalized support program designed to help meet your individual needs as you start and continue on RELYVRIO.

ACT team members are available to assist you Monday through Friday, 8:00 AM to 8:00 PM ET

IMPORTANT SAFETY INFORMATION

Before you receive RELYVRIO, tell your doctor about all of your medical conditions, including if you:

  • Have pancreas, liver, or intestinal problems
  • Have heart failure, including congestive heart failure
  • Have high blood pressure
  • Have kidney problems
  • Are pregnant or plan to become pregnant. It is not known if RELYVRIO will harm your unborn baby
  • Are breastfeeding or plan to breastfeed. It is not known if RELYVRIO passes into your breast milk. You and your doctor should decide the best way to feed your baby

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements and any taurursodiol products, such as tauroursodeoxycholic acid (TUDCA).

RELYVRIO may affect the way other medicines work, and other medicines may affect how RELYVRIO works.

What are the possible side effects of RELYVRIO?

RELYVRIO may cause serious side effects, including:

  • Changes in bile acid levels. RELYVRIO may increase bile acid levels and cause worsening diarrhea if you already have problems with your liver, bile ducts, or pancreas. Your doctor should monitor you for these side effects. Some disorders of the pancreas, bile ducts, or intestines may also make it harder to absorb RELYVRIO
  • Salt (sodium) retention. RELYVRIO contains a high amount of salt. For people who are sensitive to salt intake, such as people with heart failure, high blood pressure, or kidney problems, limit the amount of salt you eat and drink. Talk to your doctor about the total amount of daily salt that is right for you. Your doctor will monitor you for signs and symptoms of salt retention during your treatment with RELYVRIO

The most common side effects of RELYVRIO include diarrhea, abdominal pain, nausea, and upper respiratory tract infection.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of RELYVRIO. Call your doctor for medical advice about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch(opens new window) or call 1-800-FDA-1088.

WHAT IS RELYVRIO?

RELYVRIO is a prescription medicine used to treat adults with amyotrophic lateral sclerosis (ALS).

For additional information, please see the Summary of Information About RELYVRIO(opens a PDF document in a new window).

IMPORTANT SAFETY INFORMATION

Before you receive RELYVRIO, tell your doctor about all of your medical conditions, including if you:

  • Have pancreas, liver, or intestinal problems
  • Have heart failure, including congestive heart failure
  • Have high blood pressure
  • Have kidney problems
  • Are pregnant or plan to become pregnant. It is not known if RELYVRIO will harm your unborn baby
  • Are breastfeeding or plan to breastfeed. It is not known if RELYVRIO passes into your breast milk. You and your doctor should decide the best way to feed your baby

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements and any taurursodiol products, such as tauroursodeoxycholic acid (TUDCA).

RELYVRIO may affect the way other medicines work, and other medicines may affect how RELYVRIO works.

What are the possible side effects of RELYVRIO?

RELYVRIO may cause serious side effects, including:

  • Changes in bile acid levels. RELYVRIO may increase bile acid levels and cause worsening diarrhea if you already have problems with your liver, bile ducts, or pancreas. Your doctor should monitor you for these side effects. Some disorders of the pancreas, bile ducts, or intestines may also make it harder to absorb RELYVRIO
  • Salt (sodium) retention. RELYVRIO contains a high amount of salt. For people who are sensitive to salt intake, such as people with heart failure, high blood pressure, or kidney problems, limit the amount of salt you eat and drink. Talk to your doctor about the total amount of daily salt that is right for you. Your doctor will monitor you for signs and symptoms of salt retention during your treatment with RELYVRIO

The most common side effects of RELYVRIO include diarrhea, abdominal pain, nausea, and upper respiratory tract infection.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of RELYVRIO. Call your doctor for medical advice about side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch(opens new window) or call 1-800-FDA-1088.

WHAT IS RELYVRIO?

RELYVRIO is a prescription medicine used to treat adults with amyotrophic lateral sclerosis (ALS).

For additional information, please see the Summary of Information About RELYVRIO(opens a PDF document in a new window).