The Many Shades of ALS Team
When: Wednesdays 12:00pm – 1:00 p.m. ET
The Many Shades of ALS Community Team brings attention to and provides resources for the mental, physical and social health of people of color living with and impacted by ALS.
- Amplifies the voices and experiences of people of color living with and impacted by ALS.
- Raises awareness of and connects people of color living with and impacted by ALS to supportive services (Community Support programs and initiatives, psychosocial, financial, etc.) and clinical trials.
- Raises awareness of ALS and people’s experiences with a focus on people of color
- Addressing physicians’ views of people of color living with ALS.
- Getting a diagnosis is difficult, we need to shorten this time.
- Addressing finances
- Addressing caregivers. Lack of paid/non-family caregivers who stick around and are culturally competent
- Grow the movement by recruiting more people living with and impacted by ALS to participate in Many Shades of ALS
- Raised awareness of ALS on social media to recruit new members
- Team members Bernie and Juan did interviews for Lorri Carey’s podcast I’m Dying to Tell You
- Team members Juan and Osiel launched a Hispanic Heritage Month campaign in on social media
- Developed “Let’s Talk About It: A Mental Health Series”
- Community member Maceo hosted a profound conversation with Chelsea Carter, PhD on Racism, Bias and Inequality within the ALS Landscape
What we are working on:
- Continuing to host Let’s Talk About It: A Mental Health Series sessions
- Raising awareness of ALS and its impact on communities of color to bring more people of color into the movement to end ALS
- Creating more culturally appropriate and effective ALS resources
a U.S. military veteran living with ALS,
living with ALS
a loved one of someone we've lost to ALS
a friend of someone we've lost to ALS