#HeartofWhatWeDo – Advocacy 101

Federal ALS Advocacy

The ALS Association is at the forefront of public policy working to improve the lives of people living with ALS and their caregivers. Federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission of The ALS Association: to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.  

Through the active participation of people with ALS and the broader community, we have made significant accomplishments together.

  • Eliminating the 5-month waiting period for people with ALS to access their Social Security Disability benefits. Previously, we eliminated the 2 year waiting period.
  • Increasing federal funding from $10 to $20 million at the Department of Defense ALS Research Program and from $83 to $111 million at the National Institutes of Health between fiscal years 2018 to 2020 for research to find treatments and a cure for ALS.
  • Leading efforts to create and securing funding for the National ALS Registry and Biorepository, a Centers for Disease Control and Prevention database of people with ALS and biological samples that helps scientists understand the disease and its causes.
  • Implementing historic regulations at the Department of Veterans Affairs designating ALS as a service-connected disease, ensuring that veterans with ALS and their survivors have access to VA benefits, including health care and disability benefits.

National ALS Advocacy Conference

Every June, individuals from across the country come together at the National ALS Advocacy Conference to bring the cause to elected officials in Washington, D.C. Through this work major strides have been made to keep ALS a priority for the federal government.

Due to Covid-19, the conference and subsequent meetings with members of Congress were held virtually for the first time ever in 2020 and will be held virtually again in 2021.

2021 Research Policy Priorities

$130M+ to fund ALS research at National Institutes of Health (NIH) to attract the next generation of neuroscientists, accelerate discovery and development of new treatments and increase the number of ALS clinical trials.

$60M for the Department of Defense ALS Research Program (DOD ALSRP) to fund clinical trials to pull through promising preclinical research and human studies into ALS drug development.

$50M for the Orphan Products Grants Program at the U.S. Food and Drug Administration (FDA) to fund research to expedite product development, foster innovative trial designs, and enabling natural history studies to better understand the disease progression and pathology.

$10M to fund research at the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention (CDC) to help researchers identify candidates for clinical trials, identify risk factors for ALS, and collect biological samples that will aid the search for treatments and a cure.  

$1M to commission a National Academy of Sciences (NAS) study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.

Action Alert: Write to Your Members of Congress

Ask Your Members of Congress to Join the ALS Caucus

The bipartisan Senate and House ALS caucuses bring together members of Congress from both sides of the aisle to raise awareness about the challenges faced by people with ALS and their families, advance policies that improve the lives of people with ALS, expand the network of support for those suffering with the disease, and advocate for investments in research to discover a cure. Send a letter to your members of Congress and ask them to join the ALS Caucus today.

State & Local ALS Advocacy

State Advocacy Day of Action

Each spring, the Western Pennsylvania and Greater Philadelphia Chapters join forces to advocate in Harrisburg for state funding. In order to be included in the state budget as a healthcare line item, advocates meet with key Pennsylvania Representatives and Senators.

To make an impact, volunteers share personal ALS stories and highlight how the Chapters utilize state funding to help with the equipment loan program, respite care grants, and ALS multidisciplinary clinic funding. Additionally, the meetings act as an opportunity to provide Chapter information to ensure the local offices know services and education are available for those diagnosed with ALS in their districts.

Due to Covid-19, the State Advocacy Day of Action and subsequent meetings were held virtually for the first time ever in 2020, and will be held virtually again in 2021.

On May 12, 2021 we are asking you to take action by making phone calls, sending emails, and using social media to have our voices heard by state policymakers about issues that have a direct impact on the lives of people living with ALS and their families.

All are welcome to join the day of action. Keep an eye out as we provide more information on how to participate later this year.

The CDC ALS Registry & Biorepository

The National ALS Registry is a program to collect and analyze data about persons living with ALS. It includes data from existing national databases and information provided by persons with ALS who choose to take part. Researchers can use Registry data to look for disease pattern changes over time. They can also try to identify whether there are common risk factors among individuals with ALS.

Get Involved

Become an ALS Advocate

By becoming an ALS Advocate, you can help change laws and policies that affect our ALS community.

To learn more and become an ALS Advocate, contact Kelsey Schooley at kelsey@cure4als.org or 412-821-3254.

Sign up for ALS Action Alerts

Visit als.quorum.us/register to review federal advocacy issues, learn about your elected officials, and take action in support of the brave individuals living with this disease.

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