Non-Profit · North Star ALS

Perspectives: The Human Side of ALS Research

by North Star ALS

At North Star ALS, our mission is to guide families through the complexities of Amyotrophic Lateral Sclerosis with research education, access and empowerment. Created in support of the North Star ALS mission, this podcast aims to deconstruct ALS research with the patient perspective in mind. Discover more research learnings, resources, and community, at NorthStarALS.org or instagram.co/northstaralsorg If you found comfort in these episodes, please consider sharing it with a friend.

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Latest episodes

Showing 5 · updated from the feed

Looking Ahead with Dr. Senda Ajroud-Driss on Tofersen/Qalsody, Illuminate Series

In this episode, Dr. Senda Ajroud-Driss discusses the journey of ALS research from gene discovery to targeted therapies, the importance of patient contributions, and the

Sep 7
41 min

Decoding Genetics: VUS SOS in ALS

In this episode, Dr. Matthew Harms discusses the complexities of ALS genetics, focusing on variants of uncertain significance (VUS), the VUS Second Opinion Service, and h

Sep 7
37 min

The Human Side of Research:Lori Hermstad and Erin Fleming, Illuminate Series.

The development of jacifusen (ulefnersen) began with families affected by FUS-ALS coming together to help bring attention to this rare form of ALS. In this conversation,

Aug 26
1 h 11 min

Genetics and the Lived Experience With Donna Bernstein, Illuminate Series

Genetic Counselor Donna Bernstein and Dr. Nadia Sethi discuss genetics and genetic counseling and their impact on drug development and access to research. Their discussi

Aug 11
42 min

Biomarkers in ALS with Dr. Michael Benatar, Illuminate Series

Most ALS research today hinges on a simple question: how do we find reliable biomarkers that can unlock faster, more targeted drug development? Dr. Michael Benatar, an

Jul 20
47 min