Something ClearPoint shareholders can do that's actually useful

AMT-130 will be here soon, but the HD community is bound tightly by trauma

Feel free to wait if you’re not comfortable talking about that drug in fear of spreading false hope to a desperate community.

I’ve ventured into discussions of applied game theory. Here’s another game that’s going to cloud minds until many years pass, and right now the flame is only a tiny spark in a pitch-black room filled with horror.

The whole of the HD community is bound by two primary fears.

Testing for the gene and having a family. People who merely have the gene are scared senseless into having a family. Some will go so far as to avoid dating when they have it. Some will let themselves not know, fall in love and then only take the test out of care for another. The lack of treatment options has made testing itself an incredibly sensitive topic. I still remember a day in 2022 when I was sitting bored outside a wind turbine doing nothing, waiting for parts to come. I was in a chatroom that went by either CLPT_loonies or CLPT_loons. I forget which it was. There were 3 well intentioned geezers and myself in there. The illustrious NeuroStockDoc (now bullishdoctor), Mike of Hiddensmallcaps, and Mani_RNA.

We were all talking about Huntingtons disease and the topic of testing came up. I said I wouldn’t care, with the implicit understanding that I would want to be tested for the gene… also because I thought we all believed ClearPoint Neuro was going to make a Huntington’s disease product actually work. What they all thought I said was that I wouldn’t care if I had Huntington’s disease which is remarkable. Those are two very different things, all horribly misunderstood and miscommunicated. I was upset for a couple of days after that because they thought I was actually dumb or insane enough to not care if I had Huntington’s disease. I’ve been misunderstood by a much, much wider audience at this point over a wide variety of topics, so, I’m kind of getting used to it now.

We don’t have direct evidence yet but pediatric gene therapy for HD like AMT-130 ought to confer a greater benefit than AMT-130 already has been observed to. If you need as much as an authority that currently exists that’s actually available, talk to your resident fintwit neurologist that’s thinking the same thing.

But even once this therapy is over the bar people will not fully realize the implications of this until generations pass for all of the evidence to accrue. That is children who are born with Huntington’s disease infused early may never actually die from Huntington’s disease. If you interrupt the negative spiral of this disease’s pathology early enough with a persistent gene therapy, there’s a chance this is exactly what we’ll see. That is something that is fundamentally different than what we will see out of the people in that trial. But it will take decades to confer this type of conviction to these families. The past is simply too dark to see through.

The nature of this therapy is such that the effects ought to compound the length & quality of a person’s life and health span. But we are mainly prisoners of time and prior experience. What many will desire is strict proof of the future. Until it’s observed, what has been dominates the outlook.

The cruel twist is that we will live in a world for decades where there’s a therapy that will probably help people with Huntington’s disease live a mostly normal life when dosed early… and yet many will still be afraid to dream of something good. Faith in something is often not a recursive belief that’s granted by theory, it’s born of observation and of an apparent reality. You probably most often drive over bridges because you’ve seen cars drive over them and come out the other side okay. It doesn’t matter who’s communicating ideas when you feel the weight of a doom that has never before ceased. Primal fears dominate our instincts and it’s easy for me to sit here and tell you to dream— I’ve been living in that dream for over 4 years now, so its walls are slightly more familiar. It’s why I was in the CLPT_Loonies chat.

A small spark in that dream finally ignited over in the corner of a room a couple months ago when we got those first 10 or so Huntington’s patients in the high dose cohort to the 2-year mark. A breath of relief was made when the FDA accepted use of the external control of a natural history cohort some fireworks went off. It will probably take a few more years to access AMT-130, and it looks like a great therapy that will do wonders. But the bulk of fuel that’s stashed away inside this dream will be slow to ignite. You can’t even see well over half of them because they’re hidden away by NDA’s or too early stage for the cretinous accountants to count them. But I hope and have faith in seeing it become a roaring fire that’s much greater than anything previously expected for all the world to marvel at in wonder. Once we’re finally there, the path to it will have been more obvious in hindsight.

Pulling it back to Huntingtons… The best thing that could be done for these people now is to slowly begin casting the spell of faith of a better future. That’s the unfortunate beginning of a great story. Here in your hands lays the beginning of something extremely big, and many will not be able to shed the weight of fear until trauma has left a permanent mark on them. That will be the journey of the first generations of Huntington’s patients which are saved.

I’m in the process of writing about scabies.