| We Did It! 2025 X-Out Blood Cancer Campaign Surpasses the $50,000 Goal |
Thanks to your incredible generosity, and the support of a generous donor match, we’re thrilled to announce that the 2025 X-Out Blood Cancer Campaign raised $50,793!
These funds will go directly toward offsetting travel costs for individuals participating in the first-ever RUNX1-FPD clinical trials.
For many families, the biggest barrier is not qualifying, it is simply getting there. Your support helps remove that barrier by providing critical financial assistance for those who need it most.
And a special thank you goes to the donor who matched almost every gift during the campaign, doubling the impact of your contributions.
Whether you gave, shared the campaign, or simply cheered us on, you helped make this possible. Your support ensures more families can access potentially life-changing care while advancing research for the entire RUNX1-FPD community.
From all of us at the RUNX1 Research Program, thank you for your compassion, your action, and your belief in a better future! |
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Announcing Our In-Person Scientific Conference and Patient Meeting:
May 2026 in Atlanta, Georgia! |
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Register Today For The 2026 10th Annual RUNX1 Scientific Conference
“Catalyzing Change: The Next Chapter in RUNX1" Wednesday, May 6 & Thursday, May 7, 2026 Atlanta, Georgia • Emory Conference Center Hotel
Early Bird Registration Rate Now Available Through August 5!
We’re excited to announce that the 10th Annual RUNX1 Scientific Conference will be held in-person on Wednesday, May 6, and Thursday, May 7, 2026, for the first time in Atlanta, Georgia at the beautiful Emory Conference Center Hotel!
Register now to secure the early bird rate of $150 per person (after August 5th the rate increases to $300): |
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The 2026 conference theme, “Catalyzing Change: The Next Chapter in RUNX1,” highlights our shared commitment to advancing discovery and improving outcomes for individuals affected by RUNX1-FPD. Sessions will feature: - Research presentations from leaders in the field
- Collaborative breakout discussions
- Poster presentations by graduate and postdoctoral researchers
Attendees will gain early access to new findings and explore emerging research directions that are helping to shape the future of RUNX1-FPD care. More information coming soon! |
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| 2026 RUNX1 Patient Meeting |
We’re excited to bring the RUNX1 Patient Meeting back in person to everyone in 2026! This free event is tailored for individuals and families affected by RUNX1-FPD.
Join us Thursday. May 7 & Friday, May 8, 2026 at the Emory Conference Center Hotel in Atlanta for two days of connection, support, and patient-focused discussions. The gathering will include updates on the latest RUNX1-FPD research and clinical trials, as well as opportunities to share experiences with others who understand this journey. More details on registration coming soon! |
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We hope to see you all in Atlanta next year! |
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Now Open: The RUNX1 Patient Tissue Bank |
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We’re thrilled to announce that the RUNX1 Patient Tissue Bank is ready to accept samples. This initiative offers individuals with RUNX1-FPD a new and easy way to contribute to research by providing samples during their routine medical appointments.
Led by our RRP-funded partners at the University of Pennsylvania, the Tissue Bank allows participants to donate small blood or bone marrow samples that will be securely stored and used by approved researchers.
Who Can Participate - Individuals with a confirmed germline RUNX1 variant (Pathogenic, Likely Pathogenic, or Variant of Uncertain Significance)
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Unaffected family members may also be eligible to participate as comparison participants (controls)
Note that if you are participating in the NIH RUNX1-FPD Clinical Study your samples are already at work and being shared with the research community. Watch the Webinar Recording
On June 25th, Dr. Martin Carroll (study co-lead at the University of Pennsylvania) explained the Tissue Bank’s goals, how it works, and how it supports the RUNX1-FPD community in a webinar. The study’s Clinical Research Coordinator, Akmal Salimov, also explained how to get started on the Matrix platform and next steps after you enroll. Missed the live session? Watch the full webinar recording below: |
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Call for Abstract Submissions: 2025 Virtual Poster Sessions Deadline: Monday, July 21 at 3:00 p.m. PM |
Submit your research abstract for consideration in our virtual poster sessions taking place during the 2025 Virtual 9th Annual RUNX1 Scientific Conference .
Poster sessions will be held on both days of the conference: September 9 & 10, 2025.
Abstracts will be evaluated based on alignment with RRP’s mission to advance discovery, improve quality of life, and prevent blood cancer in individuals with RUNX1-FPD.
All are welcome to apply. Please contact Dr. Katrin Ericson with any questions.
Click below to review the abstract guidelines: |
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Two Ways You Can Help RUNX1 Research Without Leaving Home
By: Dr. Amanda Eggen |
If you or someone in your family is living with RUNX1-FPD, there are two important ways you can help move research forward from your home.
Through the RUNX1 Research Portal, you can easily join both the RUNX1 Patient Data Hub (PDH) and the RUNX1 Patient Tissue Bank. These studies work together to give researchers the information they need to better understand RUNX1-FPD and improve care for everyone affected by it. And with one simple sign-up, you can contribute to both.
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We're always looking for relevant RUNX1 content to add to the blog. Would you like to contribute? If you’re interested in being a guest author, please contact Catherine Pelton at cpelton@runx1-fpd.org.
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Don't Forget To Register For The 2025 Virtual RUNX1 Patient Meeting |
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Join us online on Friday, September 19th, 2025, for a supportive, patient-centered day featuring: -
A personal patient story
- Breakout sessions on parenting, managing uncertainty, and caregiver support
- Wellness strategies
- A Scientific Conference research update breakdown
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Clinical trial updates from investigators leading the sirolimus, imatinib, and stem cell harvesting and banking studies
- Open discussion and live Q&A with experts and peers
Whether you're newly diagnosed or have been with us for years, this meeting is designed with you and your family in mind.
For questions about the Patient Meeting, please contact Dr. Amanda Eggen, RRP’s Director of Patient Engagement and Clinical Programs. Click below to register: |
RRP New RUNX1 Patient & Family Coffee Chat Wednesday, July 30th 9:30 a.m. PDT • 12:30 p.m. EDT • 5:30 p.m. BST |
Join us for the next RRP Patient & Family Coffee Chat! These informal gatherings are a great opportunity to connect with other patients and family members in the community. Whether you are newly diagnosed or have been part of the community for years, your voice matters. Bring a cup of coffee, your questions, or simply yourself. Everyone is welcome!
After you register, Amanda Eggen will follow up with event details. If you have questions, please reach out to Amanda at aeggen@runx1-fpd.org.
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Drs. Katrin Ericson and Amanda Eggen hosted a RUNX1 X-Change event on Tuesday, June 24, where patients and family members joined for an informal discussion. The group focused on two main topics during the session. |
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Cardiac Health and RUNX1-FPD
The group explored possible links between RUNX1-FPD and cardiovascular risk.
Katrin discussed how clonal hematopoiesis (CH), a condition defined by the presence of somatic mutations in the bone marrow, is associated with an increased risk of heart disease in the general aging population. |
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Ongoing research by our RUNX1 scientific community has shown that CH emerges earlier in individuals with RUNX1-FPD. Despite this, there is no evidence of a higher incidence of cardiac disease in the RUNX1 community to date.
Katrin also addressed the question of whether RUNX1 variants affect the heart more directly. While mouse models suggest a possible role for RUNX1 in cardiac valve development, similar findings have not been seen in human patients.
Supporting this, Amanda shared data from the RUNX1 Patient Data Hub, where only 15.7% of 57 respondents reported heart issues—notably lower than the 33% prevalence in the general U.S. population, according to All of Us research data. |
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Planning for the May 2026 In-Person Patient Meeting Amanda also shared early plans for an in-person meeting May 7–9, 2026 in Atlanta, which will include both scientific and patient-focused sessions. The group discussed preferred session formats and topics, and the possibility of offering family- and child-friendly programming, depending on interest and available resources.
Several participants emphasized how valuable the breakout sessions alongside scientists were during a previous meeting. Participants emphasized the value of informal conversations and making complex science more accessible.
Note: If you have thoughts on these topics, please reach out to Amanda at aeggen@runx1-fpd.org. |
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We hope others in the community join the next RUNX1 X-Change on Tues, November 11. |
Register Today for the 2025 Virtual RUNX1 Scientific Conference |
Join us virtually Tuesday, September 9th & Wednesday, September 10th, 2025, as we explore “Navigating New Frontiers” in RUNX1-FPD science, innovation, and patient-centered care. More details to come on topics and presenters for both events. We’re excited to see you all again online this year! This technical, science-focused event features presentations from RRP grantees and other leading experts across the field. Topics include: - Modulating Inflammation to Control Clonal Evolution
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RUNX1 and the Immune System
- Advances in Transplants and Cell Therapies
- Controlling Inflammation with Diet in Blood Cancer Patients
- RUNX1 Mutations - Impact on Gene Regulatory Networks & Variant Classification
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RUNX1 Patient Experiences & Clinical Research
- Deciphering Maladaptive from Adaptive Somatic Mutations
View the full agenda and register here: |
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Stay current with the latest peer-reviewed studies in RUNX1-FPD science and clinical research!
The RUNX1 Radar tracks and shares newly published findings from across the field, including work from RRP-funded investigators and leading researchers worldwide.
Explore recent research articles in Science Translational Medicine, Blood Advances, The Journal of Clinical Investigation, Genes & Development, and more. |
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Please support blood cancer prevention research and help find treatments for RUNX1-FPD patients. RRP commits 100% of direct donations to fund research and educational programs.
Thank you! |
Thanks for following our progress and being a part of the RRP community! Visit www.runx1-fpd.org to learn more and keep up-to-date between newsletters. |
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