Outreach and Inclusion Initiative
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!
Get involved! Select an action below to make an impact:
Sign up to be an ALS Outreach Advocate
The Many Shades of ALS Team
Community Outreach Team
Looking for support? Get connected with resources, information and virtual events below:
- Peer Support Initiative
Through our Peer Support Initiative, we can connect you with a person who has a similar connection to ALS as you, whether that’s race/ethnicity, gender, veteran status, gene status, caregiver status and more.
- ALS Support Groups
Our virtual support groups are hosted on Zoom. We have one for all people living with ALS, one for veterans living with ALS, and 3 different groups for caregivers and loved ones with varying connections to ALS – a bereavement group, one for primary caregivers and one for loved ones of someone living with ALS.
- ALS Support Team
Our ALS Support Specialists work one-on-one with people impacted by ALS to help support and share custom resources for clients as they seek to better understand how to navigate living with ALS. From the moment you connect, our ALS Support Specialists are there for you. They’ll be your fierce advocates, resource specialists and listening partners. In addition to providing you with helpful information, access to resources and emotional support, they will regularly check in to make sure your wellbeing and needs are taken care of.
- Online ALS Resource Center
Our online resource center is designed to be a one-stop shop for those impacted by ALS. We’ve worked closely with ALS community members to compile and create resources that would be most helpful to them and the next person diagnosed.
- Spanish Language ALS Resources
Getting an ALS diagnosis, finding resources and information, and connecting with the right organizations is difficult. For Spanish-speakers impacted by ALS, the addition of a language barrier complicates the entire process and can become a seemingly insurmountable hurdle to accessing care. The Many Shades of ALS team compiled Spanish language resources such as support groups, guides and advocacy opportunities, which are outlined on this webpage.
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
- Albany, GA
- Amarillo, TX
- Bismarck, ND
- Casper, WY
- Jackson, MS
- Mobile, AL
- Odessa, TX
- Rapid City, SD
- Savannah, GA
- Shreveport, LA
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
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
Connect with us: [email protected]