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The Many Shades of ALS Team


When: Wednesdays 12:00pm – 1:00 p.m. ET  

Mission Statement:

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.

Goals: 

  • 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

Accomplishments:

  • 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

Co-Leads

Juan Reyes

a U.S. military veteran living with ALS,
living with ALS

Katrina Byrd

a loved one of someone we've lost to ALS

Scribe

Lisa McMullen

a friend of someone we've lost to ALS

Team Members

Osiel Mendoza

living with ALS

Maceo Carter

living with ALS

Bernadine Okeke

living with ALS

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