We live, we dream and we love in-between our hematology appointments.

We all want to best manage our journey.

I live with ET and I am JAK2 positive. For a long time I was learning how to manage it, and honestly struggling. I did not understand why the tired days were tired, or what I could do differently to give the next day a better chance.

Then there was a stretch where my hemoglobin fell well below our target and I had no idea. I found out at my appointment two months later, and we adjusted my hydroxyurea dose to bring it back. Nothing had gone wrong with my care. The information simply had nowhere to go in between visits.

Then I learned I was not alone. Volunteering alongside the team at the MPN Research Foundation, who work harder and care more than almost anyone I have met, I started hearing my own story back from people I had never spoken to. It was not a personal failing. It was the shape of living with an MPN.

So I figured, why not try to make it better. That is when “I” became a much larger “we”: hematologists who gave their time and their opinions, the Patient Impact Council at the MPN Research Foundation, patients in online support groups who told me plainly what was missing, and the more than 600 people who completed the 2024 unmet needs assessment. They are the reason I dug into every detail, so this could be something the community uses and is proud of.

So here it is. And we are just starting.