We have watched the senseless killings of George Floyd, Breonna Taylor, and Ahmaud Arbery, and stand in solidarity with their families and protestors around the country who have called for an end to systemic racism. We believe that systemic racism has a direct effect on the lives of many within the ALS community. We can and must do more to erase the disparities that exist for people with ALS of different races, ethnicities, and socio-economic circumstances. Here is what that means for our ALS community:

• We are committed to creating new tools and establishing new partnerships to help fight the health care disparities that lead to disproportionate suffering and deaths among people of color. We can do more to ensure all members of our community have equal access to ALS information, care services, multidisciplinary treatments, and ultimately, help ensure they live longer and more meaningful lives.
• We recognize that the make-up of our Association is not fully representative of the communities we serve and are committed to improving diversity and inclusion in our own leadership, both at the national level and among our chapters. In February, at our Leadership Conference, we committed budget and management resources to increasing diversity, beginning with our governing bodies – our national and chapter boards. This process will also include increasing diversity among the staff at the national and chapter levels. 

These are just the first steps that we will take to ensure that people with ALS and their families, who represent diverse backgrounds, receive equitable care and support, and that our own policies and services better reflect these stakeholders.

We know we have a lot more to do and that this affects our entire community, so we welcome any outside feedback and participation in this process. You can reach us at questions@alsa-national.org. We look forward to reporting back on our progress at the end of the year.