Individuals who have been impacted by ALS—whether people living with the disease, caregivers, family, or friends—continue to make important contributions that advance ALS research.

The ALS community, bound by common cause, always welcomes new volunteers. People often find meaningful ways to make contributions that align with their passions and draw on their existing talents. This may be done by working with one or more of the many ALS advocacy organizations.

​Getting involved can take many forms, such as advocating for ALS legislation, helping shape the future of research, and raising funds for organizations that support research efforts.
“Advocacy can be very intimidating when you first get into it, but there truly is a place for everybody.”

​- Mandi Bailey, ALS Advocate

Changing Public Policy and Increasing Funding

The ALS advocacy community is small but mighty. For over 25 years, ALS organizations and individuals impacted by ALS have joined forces to advocate for specific issues and successfully pass meaningful legislation at the federal and state levels. At the federal level, advocacy efforts are responsible for:
  • Eliminating the Social Security Disability and Medicare waiting periods so people living with ALS don’t have to wait to receive benefits
  • Designating ALS as a service-connected disease so Veterans and their families have access to benefits through the VA
  • Creating the CDC National ALS Registry to identify risk factors, estimate how many people have ALS, and share data with researchers
  • Increasing federal funding by hundreds of millions of dollars through various pieces of legislation for different types of ALS research
There are always initiatives in the works—and there are many ways to get involved—big and small. You could call or email your elected representatives about ALS-related legislation, or, you could travel to Capitol Hill or your state capital to advocate in person.

The following ALS organizations typically lead major legislative initiatives:

  • I AM ALS is a patient-led nonprofit organization that leads efforts to increase federal funding for ALS research. It supports year-round advocacy campaigns, hosts an annual Community Summit in Washington, D.C., and has a Legislative Affairs Team for people who want to take a more active role.
  • The ALS Association plays a major role in lobbying for ALS public policy and research funding. You can visit its main advocacy page to learn more, get involved, and take direct action on current campaigns.
  • ALS United is a collaborative network of 15 independent, locally-governed nonprofit organizations, including ALS Network, that provides local care and support, funds research, and drives policy change. Its advocacy efforts include lobbying on Capitol Hill and providing action alerts that make it easy to take action on important issues.

Shaping the Future of ALS Research

In recent years, ALS advocates have carved out a seat at the table next to researchers, institutions, organizations, and drug companies. The commonly used phrase “Nothing about us without us” draws attention to the importance of including the voices of people who have been impacted by ALS in all discussions and decisions about ALS research.

​If you have been impacted by ALS, you understand the disease through lived experience—and this makes you an expert. You do not need a scientific background to get involved.​

​Before diving into ALS research advocacy, though, it is important to first learn about research so you can be knowledgeable and effective. You can start by attending an online webinar or meeting.

The ALS Clinical Research Learning Institute® (CRLI)

For people who want to play a larger role, the best entry point is often attending a two-day intensive CRLI training organized by NEALS (Network of Excellence for ALS).

The CRLI curriculum covers various aspects of ALS clinical research, including study design, data analysis, ethical considerations, and community engagement opportunities. CRLI programs may be in-person and/or virtual.
Anyone who has been impacted by ALS (patients, caregivers, family members, etc.) may apply. You do not need to have a scientific background.

After completing the two-day training, you will be recognized as a NEALS ALS Research Ambassador. This designation can open the door to opportunities to help shape the future of ALS research. As a Research Ambassador, you can join monthly video calls that include research updates, presentations, and engagement opportunities.

CRLI graduates have served on patient advisory boards for organizations and pharmaceutical companies, reviewed grant proposals, made clinical trials more patient-friendly, attended conferences, combatted misinformation online, and more.
Here are some other meaningful ways you can get involved:

  • The Alliance Fellows Program from the International Alliance of ALS/MND Associations is an online educational program that helps participants around the world build the knowledge and confidence needed to engage more meaningfully in research and advocacy conversations.
  • The Clinical Trials Team hosted by I AM ALS works directly with researchers, government agencies, and drug sponsors to ensure accessibility, efficiency, and humaneness of ALS drug and therapy development and approval. It also collects and distributes information regarding clinical trials and the latest research to the ALS community.
  • The Veterans ALS Action Committee hosted by ALS Hope Foundation is dedicated to increasing Veteran awareness of and participation in clinical trials and research through education and outreach. Its Veterans Clinical Research Learning Institute (VCRLI) is an intensive two-day learning experience dedicated to educating Veterans on the clinical research process, therapy development, the treatment landscape, and advocacy. 
  • End the Legacy is an advocacy organization and community that provides support, educational webinars, and advocacy opportunities for people impacted by genetic ALS and FTD.
If you want to dive deeper into the science and hear directly from leading researchers, you can attend an ALS research conference either in person or virtually.
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  • The annual NEALS Meeting takes place every October online and in Clearwater, Florida. It brings together researchers, clinicians, industry leaders, government and foundation partners, and individuals with lived ALS experience to discuss the latest advancements in ALS research and treatment.
  • The International Symposium on ALS/MND takes place in late November or early December at rotating locations around the world. It is the biggest annual conference dedicated to ALS/MND research.
  • ​Local ALS organizations often host their own meetings about research, care, advocacy, and other topics.
The Patient Fellows Program from the International Alliance of ALS/MND Associations brings people living with ALS/MND, caregivers, and ALS/MND gene carriers directly into global scientific conversations by providing in-person or virtual registration for the annual International Symposium on ALS/MND. ​You must first apply and be accepted. Patient Fellows may also choose to attend the International Alliance’s annual Allied Professionals Forum virtually or in person.
"ALS advocacy is both rewarding and daunting at the same time. Sometimes advocates need to step away for their own mental health and life balance. If you find yourself in that place, please know we will be here when you are ready to come back. Your personal well being is the most important thing.”

- Jill Brattain, ALS Advocate and Former Caregiver

Fundraising and Support

Despite increased federal funding, ALS research still needs financial support from the ALS community. Hundreds of scientists are doing important research, and ALS nonprofit organizations often raise money to support their efforts.
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People impacted by ALS can participate in fundraising efforts like walks and galas or donate directly to organizations that conduct and/or fund research. Volunteering to help at fundraising events is another way to contribute. Many of these organizations are included on this guide’s Partners and Resources pages.
“ALS is not an incurable disease.
​It is an underfunded one.”
​Augie Nieto, co-founder of Life Fitness, often used this phrase during his fight against ALS. His organization, Augie’s Quest to Cure ALS, has raised more than $200 million for ALS research.

Learn More

  • NEALS Community Educational Webinars cover topics such as updates on clinical trials, best practices for clinical care, and current research efforts in ALS causes and treatments.
  • The ALS TDI Town Hall is a virtual discussion led by experts in the fields of research, patient advocacy, care, awareness building, and fundraising.
  • The ALS Learning Series hosted by the Les Turner ALS Foundation includes presentations about research by experts, followed by interactive Q & A sessions.  
  • Expert Talks hosted by Everything ALS invites experts to present and discuss a wide variety of research topics.
  • The Empowering Your ALS Journey webinar series hosted by The ALS Association has expert speakers who address important topics related to research, advocacy, and more.
  • The ASK ME educational webinar series hosted by ALS Network provides an opportunity for people living with ALS and their families to learn more about topics related to research and care.

ALS RESEARCH GUIDE

Partners and Collaborators