Live Every Day

The most important person in your care team is you. Live Every Day is a patient built companion for living with a rare or chronic cancer. Founded by patient John Grudnowski, who had searched for a better way to both understand his own disease impact on his daily life, as well as, be best prepared for rare (every 3 months) appointments with his Hematologist. While searching for a great way to track, John suffered through months of fatigued caused by over medicating and ultimately leading to a dosage reduction at his next appointment. But why did that require 2 months of struggle, couldn't there be a better way to learn and undestand daily symptoms alongside crucial data like labs, medication, and even daily information like sleep and weather. While search, John also served on the Patient Impact Council for the MPN Rsearch Foundation and learned that this was not a porblem he alone faced. In fact, 3 of the top 5 unment needs as stated by the MPN Community were related to poor sumptom tracking and connection to hose they feel day to day. To build the best possible solution. John began designing Live Every Day with the help of volunteer members of the Patient Impact Councial, and aought out feedback from leading institutions such as Duke Health and The Mayo Clinic. In these exploration, we incorporated cliniically proven symptom tools such as the MPN-10 which was originally developed by Mayo Clinic and licensed for use by Live Every Day. The goal is to continue to refine the product and give patients of rare chronic diseases a tool specific to their needs. We are launching with MPNs (myloproliferative Neoplasms) and then ideally expenading to other disease types based on need. Because life with a serious diagnosis happens in the long stretches between appointments. Months can pass between visits, and the quiet patterns slip by: a symptom that slowly drifts, a change that builds week over week. Live Every Day aims to help you notice what your days have been telling you. At its heart is a simple, guided check-in built on the clinical symptom tools for your disease, starting with the MPN-10. Daily or whenever you like. Over time, your check-ins become a record of how you have really been, so you can see your own patterns and bring the full picture to your care team. BUILT AROUND YOU Free. Always. No subscription, no paywall. Managing a serious diagnosis is expensive enough. Your data, your choice. Always opt in, always reversible. Nothing is shared without your explicit permission. Private by design. Built to the same privacy framework that governs your medical records. Built by patients. Founded by an ET patient, guided by clinicians and patient advocacy organizations, and shaped by patient reviewers with lived experience. You are not navigating this alone. We are building this together, so we can all live every day.