2026 Newsletters

2026 X-Out Blood Cancer Campaign Videos

As part of the X-Out Blood Cancer Campaign, we’re highlighting several of the scientists driving progress across key areas of RUNX1-FPD research. 

These short videos offer a closer look at their work and why continued community support is essential to moving it forward. WE NEED YOUR HELP!

New Publication: Decision-Making Framework for Preemptive HSCT in RUNX1-FPD

We are pleased to share a new publication in Haematologica: “Preemptive hematopoietic stem cell transplantation in RUNX1 familial platelet disorder: a shared decision-making framework.”

This work is a patient-centered decision-making framework about preemptive hematopoietic stem cell transplantation (HSCT) in RUNX1-FPD. It brings together clinical, genetic, and psychosocial factors to help guide individualized choices in an area where there is still no clear consensus. 

Developed through collaboration across the RUNX1 community, this publication reflects input from clinicians, researchers, and patient perspectives.

We sincerely thank all contributors whose work and collaboration made this possible and continue to drive the field forward.

New: Understanding Blood Cancer Risk in Children with RUNX1-FPD

Last month, we shared that a much-anticipated NIH study on RUNX1-FPD had been published, offering new insights into blood cancer risk in children and the NIH team’s recommendations for monitoring.

As promised, we’re now sharing a patient-friendly summary to help make these findings more accessible for families.

This summary highlights key takeaways from the research, including that about 7 in 100 children with RUNX1-FPD may develop blood cancer before age 18, while most will not. It also provides guidance on monitoring and questions families may want to discuss with their care team.

Our goal is to support informed, thoughtful conversations as you consider what’s right for your child and family.

Stem Cell Harvesting & Banking Trial: What to Know

Is there anything individuals with RUNX1-FPD can do today to prepare for the future?

Our latest RUNX1 Pulse blog highlights a clinical trial exploring exactly that: safely collecting and storing stem cells now so they may be available later if emerging therapies like gene editing advance.

The study is led by Dr. Chitra Hosing at MD Anderson Cancer Center and Dr. Tim Olson at Children’s Hospital of Philadelphia.

The blog covers study eligibility, the straightforward process (G-CSF injections and apheresis), safety data, and answers to common patient questions.

Join Our May RUNX1 Patient & Family Coffee Chat

Thursday, May 21, 2026

9:00 a.m. PDT • 12:00 p.m. EDT • 5:00 p.m. BST

The next RUNX1 Patient & Family Coffee Chat is coming up!

This is an opportunity to connect with other patients and family members in the community. You are welcome to share your experiences or simply listen and learn from others. 

All you will need is a computer, tablet, or phone equipped with a camera and microphone, as well as an internet connection. Hope to see you there!

Webinar Roundup: “Can Dietary Changes Reduce Blood Cancer Risk?”

As part of the X-Out Blood Cancer Campaign kickoff, Urvi Shah, MD, blood cancer specialist at Memorial Sloan Kettering Cancer Center, explored the connections between nutrition, inflammation, and long-term blood health.

Dr. Shah’s research focuses on how dietary patterns may influence inflammation and blood cancer risk in conditions with increased susceptibility. Her work provides valuable insight into how nutrition can support strategies to help slow progression to blood cancer.

RRP Medical Education Webinar: “Recognizing Pediatric Hereditary Hematologic Malignancies”

Thursday, June 11th, 2026

11:00 a.m. PDT • 2:00 p.m. EDT • 7:00 p.m. BST

Join us for an educational session on the germline origins of pediatric blood cancers and practical approaches to recognizing and managing hereditary conditions.

Featuring a presentation by Serine Avagyan, MD, PhD (University of California, San Francisco), who will be joined afterward for a live Q&A by Vivian Chang, MD (University of California, Los Angeles), and Kayla Hamilton, MS, CGC (Dana-Farber/Boston Children's Cancer and Blood Disorders Center).

RRP Research Webinar: “Mechanisms underlying aging-associated increased heterogeneity and selection for clonal hematopoiesis mutations in hematopoietic stem cell pools.”

Wednesday, June 3rd, 2026

9:00 a.m. PDT • 12:00 p.m. EDT • 5:00 p.m. BST

Aging plays a critical role in how blood stem cells function and how the risk for conditions like clonal hematopoiesis and leukemia evolves.

In our first RRP Research Webinar of the year, James DeGregori, PhD, will share his latest research on how aging reshapes hematopoietic stem cell fitness, including the role of RUNX1-related pathways and why certain mutations gain a selective advantage in this environment. These insights offer a deeper understanding of how leukemia risk develops, including in RUNX1-FPD.

Now Accepting Applications for the 2027 RRP-ACS LEAP Grant

The RUNX1 Research Program has partnered with the American Cancer Society again to offer the Leukemia Exploration And Prevention (LEAP) Grant in 2027. 

This program supports innovative research aimed at intercepting and preventing blood cancer in individuals with RUNX1-FPD.

Applications are due by June 1, 2026. Learn more and apply:

Coming Soon: RRP–ALSF Early Career Investigator Grant

Applications will open soon for the RRP–ALSF Early Career Investigator (ECI) Grant, which supports early-career scientists studying inherited blood cancer predisposition disorders, including RUNX1-FPD. This program funds innovative research focused on intercepting the earliest changes that lead to disease.

Applications are due in December 2026. Learn more about past ECI grantees and their work: