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ALS Association Wraps Up Virtual Advocacy Conference with Calls on Congress to Act

ALS advocates participated in our 2021 Contact Congress Day to advocate for our public policy priorities that will accelerate the development, approval and access to promising treatments for ALS on Thursday, June 17, closing out a two-week long virtual advocacy conference educating lawmakers on what it will take to make ALS a livable disease and, ultimately, to find a cure.

Nearly 500 participants, including more than 200 people living with ALS and their families, attended virtual conference sessions over three days from June 8-10 to learn more about our goal to make ALS livable and discuss the urgent public policy needs of the ALS community last month.

Speakers throughout the event included Sen. Mike Braun (R-Ind.) and Rep. Diana DeGette (D-Colo.); Dr. Bryan Traynor, senior investigator at the National Institute on Aging. ALS Association board members Dr. Jinsy Andrews, Tommy May, Dr. Ken Menkhaus, Dr. John Robinson and Troy Fields; and ALS advocate Cari Meystrik also shared their unique perspectives and experience with ALS.

The Association’s intent to make ALS a livable disease means people diagnosed with ALS will have the ability to live longer lives, experience improved quality of life and prevent loved ones from getting the disease. This ambitious goal centers on three key pillars:

  • Finding new treatments and a cure.
  • Optimizing current treatments and care.
  • Preventing or delaying the harms associated with ALS.

To get there, ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.


Following the three days of informative sessions, on June 15, ALS Association chapters led delegations of their advocates in a full day of virtual congressional meetings to push Congress to support and pass critical legislation that will help the ALS community. Over 340 chapter leaders and ALS advocates made sure their voices were heard, sharing their personal stories and experience with ALS with 316 members of Congress and their staff.

To learn more about the Association’s support for the Promising Pathway Act and the ACT for ALS Act, listen to a discussion of the bills on Connecting ALS.