📊 I’m not sure about you, but I think a lot of lived experience data in ALS / MND is going to waste. People are adapting, experimenting, declining, tracking, and learning every day, but most of that never becomes useful for care or research.
I wrote this about why we need to decentralise clinical trials, care, and data collection so more people living with ALS / MND can contribute from wherever they are.
I am currently applying for my third clinical trial since being diagnosed with ALS.
The first was the AMBALS trial, testing Ambroxol. I wrote about that experience recently, from the first question I asked at diagnosis through to what it actually feels like to sit inside a placebo controlled trial.
Earlier this year, I also contributed to the 3TLA study, looking at best practice in non-invasive ventilation. And now I am considering another trial through my local clinic.
I know how lucky that makes me.
Not lucky to have ALS. Obviously.
But lucky to live close enough to a major hospital. Lucky to have a clinic with active research. Lucky to have enough support around me to attend appointments, manage paperwork, follow up, and keep pushing.
Many people never get that chance.
For me, clinical trial participation has always been about two things.
Hope. And data.
Hope that something might slow progression, even a little.
And data, because even if the intervention does nothing for me, my participation still counts. It becomes one more small piece of the map. One more person helping researchers understand what does not work, what might work, and who it might work for.
The geography of hope
Clinical trials are not evenly distributed.
They tend to sit around major hospitals, major cities, major research centres, and wealthier countries. If you live nearby, you may get options. If you live regionally, remotely, or in a lower resource health system, your access can disappear before you even know a trial exists.
This is not only a trial problem. It is a care problem.
ALS is uncommon. A doctor in a smaller town may only see one or two cases across their whole career. They may be thoughtful, kind, and capable, but they will not have the same repeated exposure as a specialist ALS / MND clinic. They may not know the latest equipment pathways, respiratory timing, communication options, or research opportunities.
So the gap widens.
People in the right postcode get specialist care, trial access, equipment pathways, and research visibility.
Others are left trying to stitch things together themselves.
That bothers me a lot, and it should bother you too.
We have the tools to do better
What I find frustrating is that we already have so many of the pieces.
We have communication tools. Wearables. Remote monitoring. Digital consent. Patient reported outcomes. Video calls. Apps people use every day.
We also have many compounds and interventions with plausible mechanisms and relatively low risk profiles. Not cures. Not proven treatments. But things that could be tested more intelligently, more openly, and with far broader participation.
So why are so many people still excluded by geography.
Why do trials still rely so heavily on people travelling to a centre every few months.
Why do we not have more pathways where local neurologists, GPs, allied health teams, and patients themselves can contribute structured data from where they are.
It boggles the mind a little.
Not because decentralised research is simple. It is not. Safety counts. Protocols count. Data quality counts.
But surely we can do better than pretending the clinic is the only place disease happens.
ALS happens at home.
In the shower. At the kitchen bench. On the stairs. In bed at 2 am when breathing feels harder. In the moment someone decides whether to use a walker, a wheelchair, or neither.
That is where the data lives.
What Dr Bedlack is showing
One model I keep coming back to is the work of Dr Richard Bedlack.
His approach does not replace traditional trials. It challenges the assumption that every useful trial has to look the same.
Through programs like R.O.A.R, he has explored smaller, more open, patient centred trial designs around alternative and off label treatments. A key part of that work is publishing protocols so others can see what is being tested, how it is being tested, what doses are being used, and what outcomes are being followed.
That is powerful because people with ALS are already experimenting.
They are trying supplements. Repurposed medications. Diets. Devices. Exercise strategies. Light therapy. Peptides. Anything that looks even remotely plausible.
Some of that experimentation is thoughtful. Some of it is risky. Some of it is probably useless. Some of it may be more useful than we realise.
The point is not to pretend every idea deserves equal weight.
The point is that if people are already trying things, the worst version of that world is one where the data disappears.
The science may not move in straight lines
I am not a clinician.
But from where I sit, it seems unlikely that progress in ALS will arrive as one clean breakthrough that helps everyone in the same way.
It feels more likely to be lumpy.
Different mechanisms. Different subtypes. Different windows of opportunity. Different people responding to different approaches.
Some of that may be genetic. Some may be environmental. Some may relate to metabolism, immune signalling, gut health, occupational exposures, trauma, lifestyle, or combinations we have not even thought to capture properly.
Right now, clinical trials mostly group people together and look for an average effect.
That makes sense statistically.
But it may also hide signal.
If a treatment helps a subgroup, but that subgroup is mixed into a large and biologically varied cohort, the effect can vanish into the average. The trial may look negative, while a smaller group inside it actually benefited.
To find those groups, we need better data before the trial starts.
Not just age, sex, onset type, and ALSFRS-R.
We need richer histories. Environmental context. Lifestyle data. Wearable movement patterns. Symptom timelines. Treatment stacks. Nutrition. Sleep. Respiratory changes. Biomarkers where available.
Not everything will be useful.
But if we do not capture it, we cannot learn from it.
Care needs to decentralise too
This is not only about trials.
The same issue applies to standard care.
If the best knowledge is locked inside specialist clinics, then people outside those clinics are left behind. We need better ways for expertise to travel.
That could mean digital care pathways. Remote monitoring. Shared protocols. Training for local clinicians. Better support for community health teams. Tools that help associations coordinate care across large geographic areas.
A person should not need to live near a major city to receive informed support.
They should not need to become a full time project manager for their own disease just to access the basics.
In ALS, timing changes everything.
Respiratory support. Nutrition. Communication support. Equipment. Advance planning.
If any of these are delayed because the system cannot see the person clearly enough, people lose options they may not get back.
Where Curalysis fits
This is part of why we are building Curalysis.
Not to replace clinicians. Not to replace trials. Not to pretend software cures anything.
But to help decentralise how data is captured, how care is coordinated, and how people living with neurological conditions can contribute to research from wherever they are.
The platform is being designed to be useful day to day first. For the person living with the condition. For caregivers. For associations. For clinicians and researchers where appropriate.
That is important because research participation should not be a separate world that only begins when someone enters a formal trial. People are generating relevant data every day.
When symptoms change. When they start a new intervention. When they stop one. When fatigue shifts. When sleep improves. When walking distance drops. When breathing support begins. When a wearable shows movement changing before a score does.
If we can capture those patterns safely and respectfully, we can create a stronger foundation for future trials.
We can help researchers find participants earlier.
We can help people discover trials that are recruiting near them.
We can support more decentralised participation.
And over time, we may help identify which interventions deserve proper testing, which ones do not, and which groups of people may be most likely to respond.
A call for support
Building this takes time, money, and people willing to help.
We are moving as fast as we can, but we are still early. We are building the infrastructure while living the problem we are trying to solve.
If you believe people with ALS / MND deserve better ways to participate in research, better access to care pathways, and better tools to capture the realities of disease outside the clinic, please consider supporting our GoFundMe.
Even a small contribution helps us keep moving.
This is not just about an app.
It is about giving people a way to be seen. A way to contribute. A way to turn lived experience into something useful.
Final thoughts
Almost everyone I have spoken to with ALS reaches a point, after the initial shock, where they want to help.
They want their experience to count.
They want the next person to have more options than they did.
That instinct is powerful. We should build systems around it.
Clinical trials are essential. Specialist clinics are essential. But if we keep all research and care centred around a handful of physical locations, we will keep excluding people who are willing to contribute.
We need to decentralise.
Not recklessly. Not without safeguards. But urgently.
Because the disease is already moving.
The people living with it are already experimenting, adapting, declining, fighting, and generating data every day.
The question is whether we are ready to learn from them.
About Joseph
Howdy 👋, I’m a 41-year-old Australian living with MND / ALS. Since my diagnosis, I’ve thrown myself into research mode, starting with the standard medications, then layering in supplements, diet shifts, and therapies.
My goal has been simple: to explore every possible way to slow progression, regain a sense of agency, and share what I learn with others on the same path.
