Silencing ALS with Neil Shneider

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/