impact ALS

The ALS Association is deeply committed to bringing the voice of people living with ALS to the therapy development process in a rigorous and effective manner. Therefore, in an effort to include your perspective to help guide the development of new drugs and services for ALS, we are conducting a survey of people with ALS and caregivers/families. This initiative, titled IMPACT-ALS (Investigating and Measuring Patient And Caregiver Trends about ALS), is a collaboration with three industry partners (Biogen, Ionis, and Cytokinetics) and several clinicians.

The survey is intended to identify the burden of ALS and concerns during the progression of the disease, preferences for treatment, and any differences in perceptions between patients and caregivers. Results from this survey are planned to be published in in peer-reviewed journals and presented through other channels, such as the international ALS meeting held in Boston this December. Results will also be accessible to all participants.

We kindly ask that you please take the time to fill out this important survey at the link below.


Click here for survey.

  • The survey should take approximately 35-minutes to complete
  • All open-ended questions are optional
  • Responses are completely anonymous
If you have any difficulty while completing the survey please call 415-262-5206 or email

Thank you for your participation in this important initiative!


The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.