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2022 ALS Collaborative Cohort

Tambourine & Milken Institute Host Annual ALS Collaborative Cohort

Last week Project ALS was lucky to join five other ALS organizations at the first in-person meeting of the ALS Collaborative Cohort—hosted by Tambourine and the Milken Institute—to discuss issues of access and inclusion within the ALS community. Project ALS’ enduring goal in addressing these issues is that all people living with ALS, their families, and the wider community understand how important research is to their process and experience of this disease.

 

We are grateful for the generosity of our funders at Tambourine, the guidance of the Milken Institute, and the collaborative spirit of our fellow cohort members: Team Gleason, the Sean M. Healey & AMG Center for ALS, the Northeast ALS Consortium (NEALS), I AM ALS, and the ALS Association Golden West Chapter.

 

Thanks to the support of Tambourine, Project ALS has been able to expand the impact of the ALS Families Project at Columbia University—which studies relatives of ALS patients who carry genetic mutations associated with the disease—to reach more families at-risk of developing ALS, without regard to their socioeconomic status, geographic location, or prior knowledge of ALS or related diseases. The impact of the Families Project extends beyond genetic forms of ALS. A critical aim of studying presymptomatic changes in those who are at risk of developing ALS is to identify biomarkers that will accelerate diagnosis and enable earlier treatment for all people with ALS.

 

These past two years have reaffirmed that we can reach more people through true collaboration, connection, and communication. We must all seek out these opportunities and not wait for them to come to us. Again, we thank Tambourine and our fellow collaborators for their commitment to changing the face of ALS for all.


Want to learn more about the ALS Families Project? Visit here for more information: https://bit.ly/3LNnao

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