Whether as a person living with ALS or as a caregiver or loved one to someone living with ALS, sharing your story can help others in the ALS community and beyond feel connected to the impact of this disease. Your personal perspective plays an important role in educating and mobilizing policymakers to allocate funding to develop treatments for ALS and work to improve the lives of people living with ALS.

Use the form below to share the impact ALS has had on you and your loved ones. You can record video through this platform using a computer webcam or smartphone camera, or use the text box below to submit a written testimony. If you want some guidelines for recording video, you can reference our video tip sheet.

You can also share how your experience with ALS connects to our federal or state policy priorities, such as accessing affordable medications, insurance, and equipment, and the importance of genetic counseling and testing.

Share Your Story with Us