The Patient and Family Advisory Council (PFAC)

The Patient and Family Advisory Council (PFAC) unites people living with ALS, families, caregivers and medical/support professionals to best serve the medical, research and educational needs of those affected with ALS.

Purpose of the PFAC: 

  • Empower patients, family members and caregivers to give the Foundation direct input in regards to improving the care and services provided.
  • Give the Foundation the ability to hear the needs and opinions of patients and their family members.

It is our hope that through the involvement of people who have been directly affected by ALS, we can build and strengthen the programming offered by the Foundation to ensure we are best serving those who utilize our services both today and in the future.

Currently, the council is comprised of six spouses of people with ALS who have passed away, two people currently living with ALS, one caregiver and two Foundation representatives, the Director of Patient Services and the Vice President of Medical Services. At the first council meeting in early March, council members discussed their desire to give back to other families going through the same journey.  Specific initiatives included legislative ALS advocacy issues and how to best make their voices heard by  Congress and encourage others to do the same. As Chicagoland’s leader in ALS research, patient support and education, the Foundation looks forward to the PFAC’s ongoing input to strengthen and expand its extensive programming.

The Council reports to the Patient Services Committee which then reports to the Foundation’s Board of Directors

For more information, contact or call 847 679 3311


“We hope to be here when the Foundation turns off their lights and says, ‘we found a cure.'”Cindy, daughter of person living with ALS