The I AM ALS Outreach and Inclusion Initiative was created to expand access to critical ALS support, resources and services, as well as increase ALS awareness in under-resourced communities. Our efforts are currently focused on people who identify as Black and/or African American and people/communities that are more than a 90 minute drive or 200 miles from an ALS clinic. Both of these communities historically and currently experience a lack of access to support services, appropriate care, and healthcare information and do not currently make up a large portion of the people of whom we support and reach.

Keep reading to learn how you can get involved, get connected to support, or join us in learning!

The Many Shades of ALS Team

Join the team

Community Outreach Team

Join the fight

Looking for support? Get connected with resources, information and virtual events below:

Peer Support Initiative

ALS Support Groups

ALS Support Team

Online ALS Resource Center

Spanish Language ALS Resources

Depicted above are the 10 cities we are prioritizing through our Outreach and Inclusion Initiative. Each of these cities are more than 90 minutes or 200 miles from the nearest ALS clinic and face unique barriers in getting access to specialized ALS care.

Some of these unique barriers include

• A lack of primary care physicians and health professionals – leading to longer wait times to see a doctor and with a rare disease like ALS, seeing a specialist is critical in getting access to resources, care, information and even a diagnosis
• Higher rates of uninsured people – leading to people not receiving or being able to afford new drugs and technologies
• Access issues to reliable transportation – leading to delayed or missed appointments

1. Albany, GA
2. Amarillo, TX
3. Bismarck, ND
4. Casper, WY
5. Jackson, MS
6. Mobile, AL
7. Odessa, TX
8. Rapid City, SD
9. Savannah, GA
10. Shreveport, LA

Our Collaborators

Join us in learning!

Where Research Meets Reality – Black in Neuro x I AM ALS

Pat Dolan’s Geospatial Hub Maps

Dr. Chelsey Carter’s writing and publications

NeuroRacism – Black in Neuro Week

I AM ALS Language Guide

Racism, Bias and Inequality within the ALS Landscape

Dr. Jonathan Jackson & Closing Remarks | Racism & its Implications in Clinical Research Workshop

Ask Me Anything ALS – Addressing ALS Communication Challenges

Stories from ALS Community Members

“I originally thought I would never be trached, at that moment, looking at my two daughters and husband, I decided that they needed me a little while longer and I would do whatever was necessary to be here for them. Deciding on a trach is an individual choice that we all must make. One choice is no better than another, it’s what is best for you and your family.” Chanel Hobbs – My Trach Story

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