It's Never Just Cancer
By Monica Hope-Jones Babich
When Tim and I first founded the RUNX1 Research Program, we spent a great deal of time thinking about what the aims of the organisation should be and how we’d communicate that. A focused mission is where direction lives, and a tagline helps advertise that to the world.
Of course, we wanted to do it all: spread the word in the medical community, have as much global research talent working on this as possible, find out as much as we could about how the disorder works, help and support patients, prevent cancer from manifesting, and ideally correct the mutation.
A few years later, and after Dr. Katrin Ericson joined as our Executive Director, we signed off our emails with "Committed to building awareness, supporting patients, and finding a cure for RUNX1-FPD." It was a mouthful, and we meant every word, but not exactly memorable.
Meanwhile, we needed our grant program to have strategic clarity and focus so we could have enough power to make a dent in people’s lives. And so our research was and continues to be focused on the dual aspects of understanding RUNX1 biology and finding targetable biomarkers with the aim of preventing cancer.
We had a hunch and a hope that the solutions to that big problem would help us solve the other questions along the way.
Along with laser focus, our tempo has always been speed. We aren't here to follow every possible thread or to support research for its own sake. We are here to move the needle, today, on the shadow many of us live under: blood cancer. And so we shortened our tagline. We made it sharp and memorable, choosing language that matched what our science was trying to do.
“One Goal. Prevent Blood Cancer."
But as those of you with the mutation know full well, the prospect of cancer isn’t the only thing that shows up in life. My husband Tim suffers from extraordinarily bad allergies. All-consuming. Thirteen years ago, we left a city we loved because his body simply could not tolerate what the environment was doing to him. A cocktail of medications barely took the edge off. And so we moved, and I wondered: could it be the RUNX1?
Over the years, through the NIH Natural History Study, our own data hub, coffee chats, and the private Facebook group, I've watched families asking the same questions. Mothers, fathers, students, grandparents – all of us making connections and correlations of our own. It seems we’re all trying to understand what a RUNX1 mutation is, and not just what it might become. Fortunately, there have been more answers along the way. (Yes, those allergies were connected.)
We know that the diagnostic odyssey in our patient community is a real thing. Many patients have cycled through dermatologists, allergists, gastroenterologists, and ENTs before finding the one person who asked the right question and got them the test that brought their eventual diagnosis. That landscape is shifting. The work RRP has done has sent ripples outward, improving awareness, and changing how clinicians think about inherited blood disorders.
Katrin recently gave a presentation called "Beyond the Blood: What RUNX1 May Be Doing in the Rest of Your Body" (blog version). It collated some of the many issues community members have noticed and wondered about for years; the way this mutation touches so many systems. Our tagline may be sharp, but let me be clear: our focus extends to all of that too.
There's a lot of invisible emotional processing in having a family member with RUNX1-FPD. There’s the constant background white noise of trying to understand and make sense of the unknowns around the body, the disorder, the future. And for everyone carrying this mutation, the experience is vast, multifaceted, often unique, and certainly not reducible to one tagline.
Part of our mission at RRP has a strategic focus: prevent blood cancer. But our curiosity and our care? Those are expansive. We are listening to the questions you’re asking, and we’re committed to finding the answers.
Because as long-time RUNX1-FPD’er, friend, and RGPC member, Sean Cryan always says: “It’s never just cancer.”
About the Author
Monica Hope-Jones Babich is a Co-Founder and Director of the RUNX1 Research Program. A writer, artist, and rare disease advocate, she and her husband, Tim, founded the organization after their own family’s experience with RUNX1-FPD highlighted the urgent need for greater awareness and support. She holds a master’s degree in Art History from The Courtauld Institute of Art, University of London, and has a background in English, communication, and design. Through storytelling, art, and advocacy, she works to build understanding and drive meaningful change for families living with rare genetic conditions.