Become an Advocate

As an advocate, you can help change the laws and policies that affect thousands of persons with ALS and their families.

What is Advocacy and why is it important?

Advocate: noun
/ˈadvəkət/
a person who publicly supports or recommends a particular cause or policy.

Our advocates are leaders in advocating for policies that would improve the lives of those living with ALS, their families and caregivers. Through years of testifying to elected leaders, our advocates have led to increased federal funding for ALS research, passage of the Medicare waiver for ALS patients, the presumptive disability ruling from the Social Security Administration, and funding in Pennsylvania, New Jersey, and Delaware.

How You Can Help

Our advocates are passionate about encouraging government officials at all levels — state, local, and federal — to improve awareness and resources for people affected by ALS.

Advocates affect real change in the way that our government responds to the needs of the ALS community.

Sharing your connection to ALS in person, over the phone, in an email or even a letter can help educate and mobilize our elected officials to take action! Our ALS Advocates help change the laws and policies that affect all people with ALS and their families every single year.

Choose the "Public Policy" interest using the email sign-up below to stay informed.

Koonz
Mary Gay Scanlon
Andy Kim
Advocates
Rep. Thompson and ALS United Mid-Atlantic Advocates
Lura and Peter at Capitol

ALS United Mid-Atlantic advocates use their stories to make an impact for all those affected by ALS. Advocates Sarah Brendle and Lenny Rafalko talked with Pennsylvania Congressman Brian Fitzpatrick about the need to pass the ALS Better Care Act and Dr. Stacy Lewin Farber testified to the New Jersey Assembly Budget Committee about fully funding ALS care. These stories make a significant impact on advancing our priorities.

ALS United thanks Congress for passing the bipartisan Federal Aviation Administration reauthorization bill, which includes important provisions to improve accessibility in air travel. These changes come after years of work by ALS advocates from across the country to highlight the struggles they face when traveling, particularly those who use wheelchairs.

You are invited to join ALS United Mid-Atlantic for I AM ALS’s inaugural Community Summit and third annual DC ALS Awareness Event. While in-person attendance options are now fully booked, you can still participate virtually from Wednesday, May 29 through Friday, May 31. Registration for the event may be completed HERE.

Fund Quality ALS Care at the State Level

ALS United Mid-Atlantic advocates for full funding of ALS care services at the national and state level. Through the power of personal advocacy, the ALS community has achieved significant funding for ALS care in Pennsylvania, New Jersey, and Delaware, which totaled over $2.5 million from these state budgets in FY 22-23. Our goal is to sustain and grow this funding and search for more ways to benefit the ALS cause at the state level.