Compass is still being developed and is effectively in beta. Some content and features may be incomplete, change, or not work as expected.
Content is anchored to trusted sources where available, but Compass has not yet been clinically reviewed. It provides general information rather than medical advice.
Feedback helps us identify gaps, errors, usability problems and opportunities to improve Compass over time.
The story behind Compass
The information exists. Navigating it is the difficult part — why we built Compass, what the ALS/MND community told us, and where we hope the work leads.
The information exists. Navigating it is the difficult part.
After an ALS/MND diagnosis, there is an enormous amount to learn.
There are excellent resources produced by ALS/MND organisations, health services, researchers, clinicians and people with lived experience. There are guidelines, websites, PDFs, videos, support services, research programs and community groups.
The problem is not simply a lack of information.
It is working out what matters to you, right now.
What should you ask about at your next appointment? What might be useful to prepare for before it becomes urgent? Which decisions can wait? What options do you not yet know exist? And how do you keep track of all of it while living with a condition that is already demanding more of your time and energy?
That was the problem Compass set out to explore.
Compass grew out of Curalysis
Compass sits behind a broader project called Curalysis (opens in a new tab).
We started building Curalysis around a simple idea: people living with neurological conditions generate an enormous amount of information about their health and care over time, but much of it remains fragmented across appointments, medications, reports, devices, notes and different services.
Curalysis is being developed as a set of practical tools to help organise that journey.
Those tools already include or are being developed around areas such as:
- medication and supplement tracking
- appointment tracking
- voice cloning
- text-to-speech
- physiotherapy diaries
- importing laboratory results
- storing and interpreting clinical reports
- tracking function over time
- tracking treatments and other interventions
But as we began thinking about how someone should actually use those tools, we ran into a more fundamental problem.
There was no single journey we could design.
ALS/MND can look very different from one person to another. Symptoms begin differently, progression differs, priorities differ, available services vary, and the right question at one point in the condition may be irrelevant to somebody else at that same point.
We could build the tools, but we still needed a map.
A way to connect those tools with the information already available across the ALS/MND community, and to help someone understand what may be relevant now, what may become relevant later, and what they may want to prepare for.
That became Compass.
We asked the community
When the idea was first shared with the ALS/MND community, more than 100 people contributed informal feedback.
Different experiences came through, but the same themes appeared repeatedly: people described being overwhelmed by information, finding useful resources too late, struggling to coordinate different parts of their care, and not always knowing which questions they should be asking.
One idea captured the problem particularly well:
There is information everywhere, but no clear way to turn it into a plan.
People were not necessarily asking for another large library of ALS/MND information.
They wanted a way to navigate what already exists, understand what was relevant to their circumstances, prepare earlier, and keep track of the things that mattered to them.
That feedback helped shape Compass.
A plan that can change with you
A useful plan for ALS/MND cannot realistically be a checklist handed to everyone at diagnosis.
What matters can depend on symptoms, onset type, rate of progression, current function, geography, personal priorities, available services and many other factors.
It also changes over time.
That is why we see Compass less as a static information website and more as the beginnings of a living navigation and planning system.
Someone might use it to understand something today, save a question for their next clinic appointment, remember a resource for later, or gradually build a plan around the things that are relevant to them.
Over time, we want Compass to become increasingly useful at helping people understand what matters now, what may matter next, and what they may want to prepare for.
Not another replacement for existing resources
Compass is not intended to replace ALS/MND organisations, clinical guidelines, multidisciplinary care teams or the many excellent resources that already exist.
Quite the opposite.
Where good information already exists, we would rather help people find it, understand why it may be relevant, and put it into context than recreate it unnecessarily.
Compass is intended to become a layer of navigation across that information.
That also means showing where information comes from, distinguishing published evidence from lived experience, and being transparent about how content has been developed and reviewed.
Built from lived experience
The Curalysis team behind Compass lives with neurological conditions.
One of us lives with ALS/MND, and the other with epilepsy.
That does not mean our experiences represent everybody living with either condition. It is precisely why community participation, clinical input and broader lived-experience review matter.
But it does mean that problems such as fatigue, accessibility, limited dexterity, information overload, coordinating care and trying to make sense of a complicated health journey are not abstract product-design exercises for us.
They are part of the reason Curalysis and Compass exist.
Compass is also helping shape Curalysis
Compass is intended to be useful in its own right as an open contribution to the ALS/MND community.
But it is also an important learning project for Curalysis.
By working out how people navigate information, build plans, identify what matters at different stages and connect questions with practical tools, we can better understand what the broader Curalysis platform should become.
The intention for Curalysis is to support longitudinal tracking of health, function, treatments, interventions and other meaningful information over time.
We want that data to become increasingly useful first to the individual, then to the people involved in their care, and, where people choose to contribute their data, eventually to help researchers answer questions that are difficult to answer from short snapshots of a person's condition.
Compass helps us understand the navigation layer that sits around that data.
Curalysis helps us explore what becomes possible when the information and tools behind that navigation can also follow someone over time.
Built in the open, and still evolving
Compass is a work in progress.
Its content is being assembled from published sources and existing resources, with AI assisting parts of the research and editorial process. Clinical and lived-experience review will continue as the project develops.
We are also deliberately learning from the people who use it.
If something is confusing, missing, poorly timed or simply not useful, we want to know.
The goal is not to build the biggest ALS/MND information resource.
The goal is to make living with the complexity of ALS/MND a little easier to navigate.
Read more about how Compass works and is reviewed, or find out how to take part.