About this tool

ALS (amyotrophic lateral sclerosis) is a disease that weakens the muscles we use to move, swallow, and breathe. ALS can also cause changes in the way people think and act. Learn the basics about ALS.

If you have a family history of ALS or a related neurologic condition — like FTD (frontotemporal degeneration), dementia, or Parkinson’s disease or a mental health condition like schizophrenia or bipolar disorder — you may have questions like:

• Am I at higher risk of developing this condition because of my family history?
• Could my children/future children have a higher risk of developing this condition?

Genetic counseling can help you find answers. A genetic counselor is a health care provider who specializes in genes and how they affect our health. After meeting with a genetic counselor, you can decide if you want genetic testing to learn more about your genetic risk for ALS and related conditions.

You’re most likely to get helpful information from genetic counseling and testing if 2 or more people in your family have ALS or a related neurologic or mental health condition.

There are different types of genetic testing depending on your situation. If you’ve been diagnosed with ALS, learn about genetic testing for people living with ALS.

Would you like to learn more about genetic counseling and testing?

Yes, I’m ready to learn more

The information in this tool is not medical advice. Always talk to your ALS care team before making any decisions about your health care.

Acknowledgements

The Les Turner ALS Foundation created the My ALS Decision Tool™ in collaboration with people living with ALS, caregivers, advocates, researchers, and clinicians. We’d like to acknowledge the following genetic counselors, who contributed valuable insights and expertise throughout the development of this tool:

• Ashley Crook, PhD, Macquarie University
• Laynie Dratch, ScM, CGC, University of Pennsylvania
• Lisa M. Kinsley, MS, CGC, Northwestern University Feinberg School of Medicine
• Jennifer Roggenbuck, MS, CGC, The Ohio State University Wexner Medical Center