The ALS community is strong, dedicated, and united by a common cause. Scientists around the world are working to find a cure, medical professionals are providing guidance and care, and ALS organizations continue to support families across the country. 

People living with ALS, caregivers, family, and friends also play a big role in the fight against ALS. You can make a difference by advocating, fundraising, volunteering, or donating.

Advocate

The ALS community’s political advocacy efforts have already resulted in legislation that has improved the quality of life of families across the country:

  • ALS patients used to have to wait 24 months between applying for Medicare and receiving benefits. Advocacy efforts reduced the waiting period to five months in 2001 and eliminated it altogether in 2020.

  • Because military veterans are twice as likely to be diagnosed with ALS, advocates helped persuade the Department of Veterans Affairs to list ALS as a service-connected disease. Since 2008, veterans with ALS receive disability compensation and other benefits through the VA.​​ ​
  • In 2008 Congress passed the ALS Registry Act, which created the National ALS Registry, a database that registers ALS patients and collects information to advance scientific research.

  • The 21st Century Cures Act became law in December 2016. In addition to providing billions of dollars to the National Institutes of Health for research, it promises $500 million for the Food and Drug Administration to accelerate drug approvals. The law also encourages the development of targeted drugs for rare diseases.

  • In 2018, Congress approved the Steve Gleason Enduring Voices Act, which provides permanent funding for speech-generating devices.
 
  • The Accelerating Access to Critical Therapies for ALS Act, which helps fund research and expedite the development and approval of therapies for ALS and other rare neurodegenerative diseases, was signed into law in 2021.
 
  • Federal funding for research has increased dramatically over the past 20 years—and advocates continue to push for more.

There is still more to be done. You can make a difference by advocating on the national level or helping raise awareness in your local community. Here are a few options:
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  • I AM ALS is a powerful patient-led movement that provides many opportunities to advocate for change. Take action with I AM ALS.
   
  • You can also apply to become an ALS Research Ambassador through the Northeast ALS Consortium (NEALS). After training, you can join other people living with ALS, caregivers, and surviving family members to help influence and improve the ALS research process.
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Fundraise

ALS fundraisers can raise awareness, generate money for research, and provide much-needed resources to ALS organizations and families. You can take part in existing fundraisers or create your own third-party event, like a bowl-a-thon, bake sale, or poker night to raise money for an organization or individual. Another option is creating an online fundraising campaign for a family you know through a crowdfunding website like GoFundMe.

Volunteer

You can help support a loved one, caregiver, or families in your community that might need assistance with care, household chores, yard work, or other tasks.

You can also contact your local ALS organization about volunteer opportunities. I AM ALS has many meaningful volunteer opportunities, including a program where you can become a peer mentor to support others impacted by ALS.

Donate

Donations from individuals make a big difference for the many wonderful ALS organizations that are dedicated to helping the ALS community. Your money can go toward finding a cure, changing laws, providing support services, improving educational resources, and more.

If your family has equipment, such as a pivot disc or wheelchair that you no longer need, contact your local ALS organization to ask if you can donate it to their loan closet.