Get Involved
The ALS community is strong, dedicated, and united by a common cause. Scientists are working tirelessly to find a cure, medical professionals are providing high-quality care, and ALS organizations continue to support families across the country. 

People 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.

I AM ALS is a powerful patient-led movement that provides many opportunities to advocate for change. Take action with I AM ALS.

The ALS Association provides multiple ways to make your voice heard, from writing letters to elected officials to attending its annual National ALS Advocacy Conference in Washington, DC. Learn how you can become an ALS Association Advocate.

You can also apply to become an ALS Research Ambassador through the Northeast ALS Consortium (NEALS). After your training, you can join other people living with ALS, caregivers, and surviving family members to help influence and improve the ALS research process.

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

If you have a loved one who has been diagnosed with ALS, visit our Family and Friends page for ways you can help support your loved one and caregiver. You can also contact your local ALS organization about helping with events or office work like mailings. You could also ask if there are any families in your community that could use assistance with things like yard work.
If you have ALS and want to make a difference, I AM ALS is a patient-driven organization that empowers people to contribute in meaningful ways, such as raising money, providing feedback for online tools and content, and sitting on a variety of active committees.

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. 

Joel Goldhirsh Education Fund

The Joel Goldhirsh Education Fund supports the development of practical, online educational resources such as the ALS Home and Daily Living Guide. You can help improve lives by making a tax-deductible donation to the ALS Hope Foundation. Thank you!