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Canceled Participation in the National ALS Registry

Virtual

About the Program: ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and […]

Caregivers: Angels in Agony

Virtual

About the Program: Every caregiver — and every caregiving journey — is unique, but there are some commonalities among caregivers of family members living with ALS. Most say caregiving is at […]

Customer Experience Journey in ALS Clinical Trials

Virtual

In 2016, a "secret shopper" initiative was launched to assess the responsiveness of ALS clinical trial sites to patient inquiries. The findings revealed significant challenges in both the quality and […]

The Importance and Impact of Life Planning Documents

Virtual

“I don’t want to talk about it.” “Not today.” Talking about dying is difficult. It’s a conversation many of us avoid, postpone, or put off—sometimes until it’s too late. But having […]

Exposomics and epigenetic ALS insights

Virtual

Exposomics and epigenetic ALS insights: How exposures alter ALS risk and progression Dr. Goutman will discuss the role of environmental exposures on ALS based on studies conducted through the University […]