Silencing ALS with Neil Shneider episode artwork

EPISODE · Aug 5, 2026 · 29 MIN

Silencing ALS with Neil Shneider

from Patient Empowerment Program: A Rare Disease Podcast

Silence ALS is an initiative that brings together Columbia University and n-Lorem to support the discovery, development, and treatment of individuals living with nano-rare genetic forms of amyotrophic lateral sclerosis (ALS) through personalized antisense oligonucleotide (ASO) medicines. Learn more about this initiative and one of its co-founders, leading ALS physician-scientist Dr. Neil Shneider in this episode of the Patient Empowerment Program podcast. On this episode we discuss: 4:00 – Developing tools to discuss with patients about the real and scary outcomes of ALS, and changing the course of a neurogenerative and fatal disease 6:52 – Experimental ASO treatments for genetic forms of ALS 9:30 – The creation of Silence ALS to treat extremely rare forms of genetically caused ALS like CHCHD10 and TARDBP and moving the collaboration forward 12:36 – Serving present day and future patient populations with the Silence ALS initiative 17:30 – Learnings gained from treated nano-rare ALS patients may translate to broader ALS groups 22:33 – To ALS patients and families, hope is powerful and makes a difference   Links:  Donate - https://www.nlorem.org/donate/  NRCP26 - https://www.nlorem.org/nano-rare-patient-colloquium-2026/  Hongene - https://www.hongene.com/ 

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Silencing ALS with Neil Shneider

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