NINDS ALS Strategic Plan Workshop

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I watched the first day of NINDS ALS Strategic Plan Workshop, and unfortunately I can't attend the second day.

Here is my take on what I watched:

  • The introduction was interesting because it offered a large overview of the research effort. I noted than East Carolina university works on restoring homeostatsis as opposed to inhibiting or activating pathways. I will try to find a link to publications.

  • I do not know if it's a cultural bias (I am French) but everyone looked happy and were congratulating each other.

  • There were a lot of discussion, but few information provided.

  • I think that overall the purpose of this meeting was that NINDS needed to connect with organisations that could use some money.

The first day there were three main themes:

  • Accelerating Research on the Biology Behind ALS

1 Unlock sporadic ALS to identify new therapeutic targets across ancestries.

Basically what scientists said is that there is only one subject of discussion: Genetics behind ALS. For them even sporadic ALS is from genetic origin. No other subject was discussed even if scientists agree they do not understand what is causing ALS.

As usual for them ALS is indeed a disease of motor neurons even if one component of Relyvrio, the recent FDA approved drug is a bile acid synthesized in the liver.

2 Understand the molecular mechanisms underlying clinical heterogeneity in ALS.

Clearly there is no room for other domain than molecular biology, even if molecular biology was unable to provide any success in neurodegenerative and chronic diseases and limited ones in other diseases such as cancer.

3 Harness emerging technologies to uncover new disease mechanisms of ALS

There are new tools in molecular biology (things like two photon microscopy) and scientists want to play with them.

  • Translating Fundamental Research into Potential ALS Therapies

1 Establish a network of ALS Centers of Excellence to support ALS translational research

This is a call to network research centers which is probably a good idea.

2 Enhance and expand ALS biosample and data infrastructure

A call for more public databases, even if they are numerous today. In my opinion, public databases are only a tool for academics to make quick and cheap studies but they are not used for more useful goals.

3 Increase the biotherapeutic pipeline by enabling clinical trials and fostering academic/industry collaboration

A lot of words, but little content. It's well known that there is little connection between academics and industry and a general contempt of the later towards the former.

Optimizing ALS Clinical Research

There were three sub-themes, but basically it was a long and unclear discussion on the premise that ALS starts 10 years before diagnostic.

It looked to me as medieval debates about "How many angels can dance on the head of a pin?" Some scientists told it in a very polite way, when they stated that it was totally impossible and even dangerous to treat preventively people at risk, and anyway most people at risk will not develop any disease.

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