Your companion for the in-between.
The biggest choices in our journey are the ones we make every day.
The Live Every Day Foundation hopes to help improve each day to support those of us with chronic or rare cancers.
The most important person in your care team is you.
I was having a hard time understanding my own symptoms.
It turned out the rest of us were too.
I could not tell what was my disease, what was my medication, and what was just a hard week, and I had no way to show anyone. When the MPN Research Foundation asked the community about MPN unmet needs in 2024, several of the priorities that came back described exactly what I had been struggling with on my own.
John Grudnowski · ET patient, and the person who started this
The MPN community asked for this.
We are working on the answer.
In 2024, the MPN Research Foundation asked the community about MPN unmet needs, and the answers keep circling the same few things. We want to understand our own numbers. We want to know our symptoms well enough to describe them out loud. And we want to walk into an appointment with the right questions already in hand, instead of thinking of them in the car afterwards.
Your data. Your decisions.
Fatigue (among other symptoms) can come from our disease, our medication, a short night, or a hard week. The only way to tell them apart is to have all your data in one place; the numbers, the appointment notes, and the life happening in-between.
The in-between is not ours alone.
We will not walk into a new community until all of this is true.
- A number that tracks the disease. Objective, clinical, and theirs, the way a platelet count belongs to an ET patient.
- A symptom instrument their doctors already trust. Not something we invented. Something a clinician reads fluently.
- A foundation willing to walk in with us. We are guests in someone else’s community, and we would rather be introduced than arrive uninvited.
- A founding patient, and doctors who will shape it. Someone who lives it, telling us what actually matters, and clinicians willing to say when we have it wrong.
If you are a patient, a doctor or a foundation interested in discussing how we could build something truly helpful for your community, please contact us at support@liveeveryday.health.
“If any part of this is familiar to you, we’d be honored to be part of your journey.”
John Grudnowski · ET patient, founder
Create your account
You are early, and that is the point. Everyone signing up now is among the first people to use Live Every Day, so some of it will not work the way you want yet. Tell us when it does not. That is how it gets better.
No invitation needed. Start on the web, in any browser. If the iPhone app has not cleared the app stores by then, we will send you a TestFlight invitation, and it moves over on its own once it is public.
An email address and a password. That is the whole sign-up.
Create your account →- Works in any browser, today
- Free to use, always
- Your data stays yours, and you can delete it
Questions, or something not working? Write to support@liveeveryday.health
A patient-built nonprofit making free tools for people living with chronic and rare cancers.
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