For patients and families
Wimly gives your daily experience structure, a record, and the ability to share it with the people who need to understand it. On any day, in whatever time you have.
You see your neurologist twice a year. In the twelve minutes of that appointment, you try to compress six months of observations — changes you noticed, falls, patterns that shifted, questions you meant to ask. Most of it disappears before you even sit down.
It is not a memory failure. It is a structural problem: your disease is continuous and your clinical care is episodic, and nothing has been built to bridge that gap. Wimly is that bridge.
It asks one question: what did you notice? You answer in whatever form works on that day — a few words, a paragraph, a voice note. It organises what you say, adds it to your record, and surfaces what it finds. The minimum useful interaction takes about thirty seconds. It is designed for the days when thirty seconds is all you have.
For patients
Your neurologist walks into your appointment having already reviewed six months of your observations. The consultation begins where the last one ended — not with ten minutes of you trying to reconstruct what happened while they wait.
The appointment stops being a test of your memory under pressure. It becomes a clinical conversation between two people who share the same picture of the last six months.
The things you notice about your own disease — the fatigue pattern, the time-of-day variation, the environmental triggers — stop being private impressions and become a structured personal record you can actually use.
Patterns that would have taken years to notice emerge in months. Decisions that used to be guesses become informed.
The tasks that sit undone because you don't have the energy to start — the benefits application, the letter to your employer, the referral request — get handled within the same session you decide they need doing.
The distance between noticing something and doing something about it collapses from weeks to minutes.
Someone in your community figured out how to navigate a conversation with their employer about SCA — what to disclose, how to frame it, what accommodation to ask for first. They documented it. It is searchable, tagged, and waiting.
Not buried in a three-year-old forum thread. Structured, domain-tagged, and findable — the moment you need it.
The knowledge you have spent years accumulating about living with this disease doesn't disappear when you're no longer able to repeat it in person. It is preserved, structured, and available to the next person who needs it.
Your experience outlasts your ability to share it. That is not a small thing.
For families and caregivers
The gait change you've been watching worsen over three months — the one that never survives the compression of a ten-minute appointment — is documented in your caregiver record, timestamped, and flagged to the clinical team before the next visit.
What caregivers observe is some of the most clinically significant information in rare disease. Wimly is the first system built to actually receive it.
Another caregiver documented the grab rail configuration that finally worked in their bathroom — the one that replaced three failed attempts and a fall. It is in the Wimly library, tagged by domain and disease stage. You find it before the fall, not after.
Practical knowledge that used to circulate only in support group conversations is now searchable and findable at the moment someone needs it.
Your own experience as a caregiver — what you observe, what you try, what exhausts you and what helps — is documented in a space that belongs to you, not absorbed invisibly into the patient's record.
Caregiving generates its own expertise. Wimly is the first platform built to recognise that.
For the SCA community
Forty patients independently noticed that their balance was consistently worse two days after high-exertion activity — not the same day. None of them knew about the others. In Wimly, that pattern surfaces as a signal: visible to the community as shared experience, and to researchers as a hypothesis worth investigating.
The community learns from itself. Observations that would have evaporated in individual memory compound into collective knowledge — continuously, with consent.
A newly diagnosed family searches "SCA3, early stage, managing at work." They find accounts from eleven people who have navigated exactly that situation — organised by domain and disease stage. Not a forum. A structured, searchable body of lived experience.
The knowledge that used to exist only in the heads of people who'd already been through it is now findable by the people who are just beginning.
Researchers studying SCA gain access to a longitudinal dataset that has never existed: continuous, patient-generated observations from real daily life — not snapshots from questionnaires administered twice a year in clinic waiting rooms.
The evidence base for understanding how this disease is actually lived — and what matters most to the people living it — changes permanently.
On a hard day, opening the app and tapping one phrase is enough. You don't have to manage your disease well to use Wimly. You just have to notice something.
Self-assessment
If you'd like to see how Wimly fits your situation, this short self-assessment takes about a minute.
How a check-in feels
A short SCA observation session — balance and fatigue — in about thirty seconds. The platform asks one question and works with whatever you give it.
Good evening. What did you notice today?
My balance was off — trouble on the stairs at work, I was holding the rail the whole way. And tired earlier than usual, around two.
Got it — trouble on the stairs, holding the rail, and tiredness earlier than usual. The stairs — you said your balance was off. Was that going up, going down, or both?
Both directions, but worse going down.
Thanks — worse going down. There's a quick way to mark how steady you felt. Pick the phrase that fits best, or skip if none of them do.
I've noted 'Needed extra care or support' — is that right?
Yes, that's right.
Here's what I have for today. Balance — 'Needed extra care or support', stairs, worse going down. Fatigue — earlier than usual, around two. Does this look right?
That's right.
Done. Your consultation package was updated with this entry. Goodnight.
Demonstration only — this conversation is hand-scripted to show how Wimly's interaction patterns work. The platform is in development; no data is captured here.
You open Wimly and it asks what you noticed. Not 'rate your symptoms on a scale of 1 to 10' — what you noticed. You answer in whatever form works on that day: a few words, a short paragraph, a voice note. The platform organises what you have shared, adds it to your personal record, and surfaces any patterns or actions it identifies from your history. The minimum useful interaction takes about thirty seconds. Most people find they want to add more once they start.
No. Wimly is designed for real life with a progressive condition — which means some days you won't have the energy, and some days nothing notable happened. There is no streak to maintain, no reminder pressure, no penalty for gaps. The platform works with whatever pattern fits your life. When you do check in, it matters. When you don't, nothing is lost except the observation you might have captured. Even an occasional record is more useful than no record at all.
Only if you choose to connect them. Sharing your record with your clinical team is optional and entirely under your control. You decide what to share, with whom, and when — whether that is your full record, a structured summary, or specific observations you want flagged before a visit. The Continuous Care Layer is designed to be added when you and your clinical team are both ready for it, not as a default condition of using the platform.
You do not have to. Research contribution is a separate, optional consent decision — not a condition of using Wimly. Everything you document is yours, and you decide what, if anything, goes beyond your personal record. If you later decide you want to contribute to research, that option is there and you will have full visibility of what is shared and with whom. If not, your record remains yours.
Get early access
Wimly is here.
Wimly v1 is approaching. Founding supporters get access on day one and a role in shaping how the platform develops.
