| Save the Date for the 5th Annual X-Out Blood Cancer Campaign! |
It’s that time of year again—the X-Out Blood Cancer Campaign is back!
This May, we’re raising funds to help RUNX1-FPD patients overcome financial barriers to participating in critical clinical trials. These trials are paving the way for better treatments, and your support ensures that those who qualify and want to participate have the opportunity.
Remember, their participation doesn’t just help advance science; it gives hope to the entire RUNX1-FPD community, and helps build a future where fewer families face the fear of a blood cancer diagnosis.
Please plan to join us in fundraising to help patients participate in research that could be life-changing. Stay tuned for updates on setting up your Givebutter fundraiser! |
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Registration Now Open: 2025 Virtual RUNX1 Conference |
Join us virtually this September 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! Scientific Conference (Researcher & Clinician Focused)
Tuesday, September 9th: 8:15 a.m PT. - 1:15 p.m. PT Wednesday, September 10th: 8:50 a.m. PT - 3:00 p.m. PT
This scientific-focused event features research updates from leading RUNX1-FPD experts, including RRP grantees and other distinguished researchers in the field. Both days will include a poster session open to graduate students and postdocs—stay tuned for application details! |
Patient Meeting (Patient & Family Focused) Friday, September 19th: 9:00 a.m. PT - 2:00 p.m. PT
This patient-focused series of discussions will include a translation of key takeaways from this year’s Scientific Conference into accessible insights. This event will also feature expert presentations tailored to patient interests, covering research updates, clinical trials, and strategies for managing RUNX1 patients’ and families’ overall well-being.
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New National Society of Genetic Counselors (NSGC) Practice Resource: Genetic Evaluation of HHMs |
The National Society of Genetic Counselors (NSGC) has released a new practice resource in the Journal of Genetic Counseling offering guidance on the genetic evaluation and management of individuals with—or at risk for—HHMs. This resource was written and developed by collaborating members of the RUNX1 and Inherited Hematologic Malignancies Consortium.
This resource is timely, as awareness and genetic testing for HHMs continue to grow across pediatric and adult oncology settings.
What you'll find inside: - Key features that suggest an HHM
- When and how to refer for germline genetic testing
- Testing strategy recommendations, including panel use and donor considerations
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Clinical management and surveillance considerations
- Guidance for family communication and cascade testing
- Notes on ethical, psychosocial, and equity considerations
This resource offers a clear framework for integrating HHMS evaluation into clinical care and is a valuable reference for both experienced and emerging practitioners.
Check out the full article for practical tools and insights to support your work: Risk assessment and genetic counseling for hematologic malignancies-Practice resource of the National Society of Genetic Counselors - PubMed
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Welcome Lydia Harper to the RRP Team! |
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| We’re excited to introduce Lydia Harper, RRP’s Communications and Operations Coordinator!
With a background in strategic communications, healthcare marketing, and community engagement, Lydia is passionate about connecting people with valuable resources and strengthening outreach efforts to make a meaningful impact.
Please join us in welcoming Lydia to the community! |
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We’re excited to introduce RUNX1 Pulse, a blog designed for our entire RUNX1-FPD community. Whether you’re a patient, family member, clinician, or researcher, RUNX1 Pulse provides insights, education, and updates to help you stay informed.
Check out our latest blog post by RRP's Director of Engagement & Clinical Programs, Amanda Eggen: |
NEW BLOG - A Note To RUNX1 Patients: New Clinical Trials Offer Hope and Opportunity |
Many in our patient community share the same concern: What does the future hold, and how can we change it? What if there was a way to take action against the uncertainties of RUNX1-FPD?
In our latest blog, Dr. Amanda Eggen shares a powerful perspective on how clinical trials offer hope and opportunity for shaping the future of RUNX1-FPD. From reducing the risk of blood cancer to improving overall health, these trials are about more than research—they’re about creating options for ourselves, our children, and future generations. |
Would you like to contribute to the RUNX1 Pulse blog? If you’re interested in being a guest author, please contact Catherine Pelton at cpelton@runx1-fpd.org. |
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Insights from the March RUNX1 X-Change Meeting for Patients and Families |
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The first-ever RUNX1 X-Change for patients and family members, hosted by Amanda Eggen and Katrin Ericson, provided a dynamic platform for discussing key issues impacting the RUNX1 community. This event highlighted the importance of patient involvement in shaping research and support strategies. Key Discussion Points: -
Understanding RUNX1-FPD: Katrin offered detailed explanations on genetic variants related to RUNX1-FPD, enhancing participants' understanding of cancer risks and associated symptoms. Her insights helped bridge complex genetic information with practical, patient-focused implications.
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Clinical Trials: The community showed a strong interest in clinical trials, emphasizing their essential role in advancing treatment options. Attendees were eager to understand how they could participate and impact ongoing research.
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Patient Meeting Agendas: The group discussed the proposed meeting agendas for the upcoming Virtual Patient Meeting on September 19th, and shared ideas for the in-person Patient Meeting (tentatively scheduled for late spring 2026). Feedback from this discussion will help shape both events–stay tuned for finalized agendas and confirmed details.
The engaging discussions underscored the critical role of the patient community in driving forward the understanding and treatment of RUNX1-FPD. The next RUNX1 X-Change is scheduled for Tuesday, June 24th! Please mark your calendars and prepare to join another enriching session where your voice can continue to make a difference. |
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UK RUNX1 Community Holds Informal Zoom Gathering |
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On Wednesday, March 25th, Amanda Eggen joined six members of the UK-based RUNX1 patient community for an informal Zoom discussion, with the agenda directed by the participants themselves. The conversation covered several important topics, including: -
UK Care Experiences: Participants shared their experiences navigating care within the UK, and discussed promising efforts underway by UK hematologists to coordinate care and research for individuals with RUNX1-FPD.
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NIH Natural History Study: Attendees exchanged helpful insights and support around traveling to the U.S. and participating in the RUNX1 Natural History Study at the National Institutes of Health.
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Clinical Trials: The group discussed current clinical trials available to the RUNX1-FPD community and their potential value. Amanda deciphered the three trials and potential benefits now and in the future for participants.
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Family Planning: UK-specific options and considerations for family planning were also highlighted, with a plan for a deeper dive and sharing of information in the future.
The group plans to meet again in approximately three months. Amanda aims to invite a genetic counselor to the next meeting to help answer questions about family planning. |
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Being a parent of a child with RUNX1-FPD can feel overwhelming at times. Many families in our community are facing the same kinds of questions: - When should we talk to our children about RUNX1-FPD?
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Is it okay to let them play contact sports?
- How do we support kids who are scared of needles during blood tests or bone marrow biopsies?
Some parents have already found comfort and support by learning about others’ experiences and parenting approaches in our private RUNX1-FPD Patient Group on Facebook and, for those in the UK, in the RUNX1 UK Group on WhatsApp. These online spaces have become a helpful resource for many.
Recently, several parents have asked for a more direct way to connect with others who also have young children living with RUNX1-FPD. They’re looking for a space where they can talk, share ideas, and feel less alone. To help make that happen, we’ve put together a short survey for parents who are interested in joining a small parent group. You can let us know how you’d like to connect—whether that’s through Zoom, a Facebook or WhatsApp group, or something else that works for you. You can also choose whether you're comfortable with us sharing your contact info with other interested parents.
If this sounds like something you'd like to be part of, we hope you’ll take a few minutes to fill out the survey: https://www.surveymonkey.com/r/RUNX1ParentGroup Once we hear from you, we’ll do our best to connect parents within the next month.
You don’t have to figure this out alone. We’re here to help you connect with others who understand what you're going through. |
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"Transcription Factor Associations Fine-Tune Expression of the RUNX1 Gene Network to Confer Regulatory Logic to Hematopoietic Gene Expression Programs”
Tuesday, April 1st
11:00 a.m. PDT • 2:00 p.m. EDT • 7:00 p.m. BST |
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Join us for a research webinar with RRP grantee Dr. Kristy Stengel as she presents her team’s latest findings on lineage-specific transcription factors and their role in hematopoietic gene regulation.
Dr. Stengel and her team’s research used acute depletion of RUNX1 and nascent transcriptomics to define RUNX1-regulated gene targets and identify the enhancers responsible for this regulation, providing new insights into how transcription factors fine-tune blood cell development. |
"Hereditary Hematologic Malignancies: Not That Rare”
Thursday, April 10th
8:00 a.m. PDT • 11:00 a.m. EDT • 4:00 p.m. BST |
Join us for a medical education webinar with Dr. Kelly Bolton where she will discuss the role of genetic testing in hereditary hematologic malignancies (HHMs) and its impact on patient outcomes.
Dr. Bolton will explore the prevalence of pathogenic germline variants, best practices for diagnosing and managing HHM patients, and the critical role of comprehensive genetic testing in improving treatment decisions—including selecting appropriate stem cell donors for transplantation—followed by an expert panel discussion. |
"Hematopoietic Stem Cell Division is Governed by Distinct RUNX1 Binding Partners” Tuesday, May 6th
11:00 a.m. PDT • 2:00 p.m. EDT • 7:00 p.m. BST |
Join RRP Scientific Advisory Board member, Dr. Leonard Zon as he presents his team’s latest discoveries on modulating RUNX1 to enhance hematopoietic stem cell (HSC) expansion in this RRP Research Webinar.
Dr. Zon’s research identifies a novel mechanism by which the RUNX1 inhibitor Ro5-3335 promotes HSC self-renewal and enhances clonal diversity by interacting with ELF1, revealing potential therapeutic strategies for improving blood system health. |
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Stay Informed—Subscribe to Our YouTube Channel!
Subscribe to the RUNX1 Research Program YouTube Channel for the latest updates on RUNX1-FPD research, patient resources, and educational webinars. By subscribing, you'll: - Never miss a webinar – Get notified when new videos are posted, including research updates, patient stories, and expert discussions.
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Access exclusive content – Watch expert-led presentations, clinical trial updates, and patient-focused Q&As.
- Stay connected – Be part of a growing community that’s advancing research and improving support for RUNX1-FPD patients and families.
Click "Subscribe" now and turn on notifications to stay up to date! |
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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! |
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