Join the ALS Patient Advocacy Coalition and
Make Your Voice Heard!


ALS often robs people of the ability to walk, use their arms, and even to speak. However, ALS doesn't have to rob you of your voice. That is why we are inviting you to join the ALS Patient Advocacy Coalition, or ALS PAC. As hope continues to grow with many breakthroughs in medical research, your voice is needed more than ever to help us bring help for today and hope for tomorrow for thousands of families facing ALS across our country.

Through the work of hundreds of ALS advocates from the Greater Philadelphia Chapter and across the country, Congress has:

  • Appropriated over $600 million in government funding for ALS research.
  • Enacted the ALS Registry Act and secured over $20 million in continued funding.
  • Created and supported the ALS Research Program at the Department of Defense, providing over $25 million total.
  • Eliminated the 24-month waiting period that people with ALS had to endure before they could start receiving Medicare benefits. ALS is now one of only TWO diseases for which the waiting period does not apply, and the waiver for ALS is the only change Congress has made to the waiting period since it was first established.
  • Supported veterans living with ALS. Military veterans are twice as likely to develop Lou Gehrig's Disease and now ALS is considered a service connected disease and these veterans are given a 100% disability rating, which means they will receive a higher level of benefits much sooner.


Clearly your voice as an ALS advocate makes a difference. The only person more effective in advocating to a legislator than a person with ALS is a person with ALS who is also a constituent. That is why we have created ALS PAC, to connect advocates and their elected officials, develop stronger relationships, and take our advocacy efforts to an even higher level.

Advocacy Day is in May every year and YOU make a tremendous difference in Washington. As an ALS PAC member, you can make a difference all year. Your job is to create awareness for elected officials so that they focus on patients and research.

As an ALS PAC member, your responsibilities include:

  • Contacting your elected leaders at least four times a year with news from the Chapter
  • Attending at least one In-District meeting with a legislator or staff.
  • Recruting more advocates to our cause.

To sign up to be a member of the ALS Patient Advocacy Coalition, simply email Tony Heyl at today!



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.