I AM ALS and Black In Neuro

I Am ALS and Black In Neuro

Where Research Meets Reality

October 18, 2022

I AM ALS and Black In Neuro are teaming up to address racism and disparities in healthcare and research within the Black community impacted by ALS. This event will bring together Black and African American people living with and impacted by ALS  and Black and African American  researchers and scientists to learn from each other and discuss the  creation of people-centered clinical research, specifically for Black people living with neurodegenerative diseases.

Due to racism, bias and discrimination in healthcare, Black and African American people living with ALS face significant barriers in getting an ALS diagnosis and access to ALS care, information, and resources. These barriers lead to a 8-month delay (compared to White counterparts) in receiving an ALS diagnosis. This ultimately delays Black people from accessing ALS treatments via clinical trials, one of the only ways to receive potential therapies.

Expect to leave this event with:

1. Ideas of ways in which scientists can better engage with the patient-population
2. Tools to combat disability discrimination
   
3. Better informed ways in which scientists can ensure Black patients are heard in the research process
4. Having heard directly from people living with and impacted by ALS
5. Having discussed ways to make clinical trials more accessible to Black people
6. With a connection to ALS
   
   

To learn more about ALS, click here.

Further details will be released shortly!