Exploring a Research-Informed Supplement — Gauging Interest (No Claims)

[ChetPTDPT]

Hi everyone — I just wanted to briefly share that I’m working with a small team on developing a supplement aimed at supporting muscle health, energy metabolism, and cellular maintenance pathways.

Like many of you, I know we’ve all seen a lot of bold claims and false hope in this space before — that’s not what I’m here to do. I’m not making any claims or suggesting this is a treatment. Our goal is simply to offer something that’s research-informed, responsibly formulated, and may serve as a supportive option for general muscle and cellular health.

We’re still in the development phase, but I wanted to get a feel for how many individuals or caregivers might be open to learning more as we move forward.

If you’d be open to staying in the loop down the road, feel free to comment or message me privately. Thank you for your time.

 

[Nikki J]

Will there be published lab studies? A trial with placebo? Of course people would be interested in that

 

[ChetPTDPT]

Thank you — that’s a great question, and exactly the direction we’d like to go.

Right now, we’ve actually developed a functional outcome measure that we plan to use for early users, assuming the product performs well once it’s available. The ultimate hope is that if we see enough early benefit and interest, it will open doors to pursue a more formal, placebo-controlled trial as additional funding becomes available.

We’re trying to take a responsible, stepwise approach — starting carefully, gathering real-world data, and hopefully building momentum toward larger studies in the future.

 

[Nikki J]

How was your outcome measure developed and validated? Why not use als-frs and or ROADS ?

 

[ChetPTDPT]

The reason we developed our own outcome measure rather than using something like ALS-FRS or ROADS is that we didn’t want to pigeonhole the product into one specific disease state this early on. Since the product is designed to support general neuromuscular and functional health, we felt a broader functional outcome measure was more appropriate to capture improvements across a wider population.

Of course, as we progress and if we begin targeting specific disease states, we would then look to incorporate validated outcome measures that are more disease-specific, such as ALS-FRS, ROADS, or others depending on the condition.

Happy to discuss further if helpful.

 

[lgelb]

This thread borders a commercial line, where you are collecting prospect contact info without providing any benefit or information in the now. If you are working in this area, a little more leg (which you can certainly show without revealing anything proprietary) would be only a show of good faith.

 

[ChetPTDPT]

Thank you for the feedback — that’s absolutely fair. The intention here isn’t to collect contacts or overstep any boundaries, but rather to gauge early interest while we continue progressing through the preclinical and early development stages.

At this point, we’re working with a few researchers with a focus on addressing several upstream mechanisms that may play a role in neurodegeneration (things like mitochondrial health, proteostasis, and cellular stress responses). While we’re still not in a position to make public claims or release specific data, we’re aiming to take a very cautious and transparent path forward, with clinical outcomes being the ultimate priority if things continue to develop well.

I certainly respect the sensitivity around these discussions, as this space has seen more than its share of false hope over the years.

 

[lgelb]

You surely don't need to post here to know that many P/CALS are up for anything that's relatively safe and attenuates the natural history of the disease. So I am closing the thread pending progress on your part.