Living with ALS (amyotrophic lateral sclerosis) in the Midwest can bring unique challenges, from limited access to specialized care centers to long travel times for clinical visits. Fortunately, several free remote resources are available to help people with ALS and their families connect with support, research, and decision-making tools from the comfort of their homes. Whether you're in rural Iowa, northern Michigan, or the Great Plains, these programs are built to meet you where you are.

The ALS Research Collaborative (ARC Study)

Make an Impact in Research from Home.

The ALS Research Collaborative (ARC Study) is the longest-running natural history study in ALS. All data can be contributed remotely, making it accessible to anyone, regardless of location. People diagnosed with ALS, as well as asymptomatic carriers of ALS-related genes, are invited to participate and make an impact in ALS research.

By joining the ARC Study, participants contribute valuable data to one of the most comprehensive ALS research studies in the world, helping scientists better understand disease progression and work toward advancing effective treatments. Data from the ARC Study is added to the ARC Data Commons, a centralized, secure database of de-identified information collected from ARC Study participants. These data are made freely available to academic researchers and nonprofit organizations to accelerate the search for treatments and, ultimately, cures for ALS.

ARC participants can also view the data they submit in a secure online portal, allowing them to track their progression over time.

Who it’s for:

  • People living with ALS who want to contribute to meaningful, long-term ALS research without traveling

  • Asymptomatic individuals with an ALS-related genetic mutation.

👉 Learn more or sign up for the ARC Study

The ALS Trial Navigator & My ALS Decision Tool™

Find the Right ALS Clinical Trial for You

For many people with ALS, clinical trials offer hope, but finding the right one can be overwhelming. The ALS Trial Navigator simplifies the process with a Guided Trial Finder that walks you through a short questionnaire and generates a personalized list of relevant clinical trials. You can then download and print that list to review options with your caregivers and care team.

When used alongside the Les Turner ALS Foundation’s My ALS Decision Tool™, the ALS Trial Navigator becomes even more powerful. This tool helps you understand the different types of ALS research and your rights as a research participant, and can help you weigh the pros and cons of participating in research based on your personal goals, disease progression, and family considerations. Together, these tools can help guide you through understanding your ALS clinical trial options and making informed decisions about participating.

Who it’s for:

  • Anyone considering participating in a clinical trial

  • People with ALS who want guidance in making informed choices

  • Caregivers helping loved ones explore treatment options

  • Clinicians who want to help navigate the ALS clinical trial landscape

👉 Explore the ALS Trial Navigator
👉 Try the My ALS Decision Tool™

Your ALS Guide

For People Living with ALS and Their Caregivers – Discover Your ALS Guide

Your ALS Guide is a comprehensive, easy-to-navigate website designed to support people living with ALS and their caregivers. From understanding the disease and managing symptoms to accessing care and planning ahead, this resource offers practical advice, support resources, and up-to-date information for every stage of the ALS journey.

Developed by a family impacted by ALS together with a team of experts, Your ALS Guide combines medical insight with personal experience, making complex topics accessible without overwhelming readers. It’s especially valuable for newly diagnosed individuals and families who need clear direction during an uncertain time.

Who it’s for:

  • People living with ALS at any stage

  • Family caregivers and loved ones

  • Healthcare providers seeking patient education resources

👉 Explore Your ALS Guide

Why These Tools Matter for the Midwest

ALS doesn’t discriminate by geography, but access often does. In many Midwestern states, there are fewer ALS centers and longer travel distances to access trials or specialists. These remote, user-friendly, and free resources help bridge that gap, ensuring that people living with ALS in the Midwest can contribute to and benefit from cutting-edge research and personalized care planning.

If you or someone you love is living with ALS in the Midwest, these tools can bring the power of information, connection, and choice right to your doorstep.

Know someone who could benefit from these resources? Share this blog or connect them with our team here at ALS TDI, who can help navigate these tools or find additional resources in their area.