MPN Research Foundation

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MPN Research Foundation

Patient-centric foundation that exists to fund research & improve outcomes for those living with MPNs Driving groundbreaking research. Improving lives.

Founded by patients for patients, MPN Research Foundation is a catalyst for research funding in pursuit of new treatments – and eventually a cure – for polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) – blood cancers collectively known as myeloproliferative neoplasms (MPNs). To date, we have funded more than $18 million in MPN research. Through a combination of MPN c

ancer research, advocacy and education, we bring together patients, researchers, and clinicians around the common goal of realizing new treatment options and ultimately, a cure for MPNs.

21/07/2025

Thrombosis doesn’t just complicate life for patients with MPNs — it may also accelerate the disease itself.

In patients with JAK2-mutated essential thrombocythemia (ET) or polycythemia vera (PV), arterial thrombotic events are strongly associated with increased risk of progression to myelofibrosis or acute leukemia. This link, detailed in Barbui et al., 2025, underscores the role of vascular complications as more than isolated events. As the authors explain, “Evidence is mounting that thrombosis not only drives vascular recurrence but also increases risks for mortality, disease transformation, and second cancers.”

By addressing thrombotic risk earlier — especially in younger patients — it may be possible to prevent the cascade of events that drive disease progression.

The MPN PROGRESSion Registry™ — launching later this fall — will aim to provide scientists with data for research that can successfully inform smarter, more proactive care strategies.

18/07/2025

🧬 ET & Genetic Mutations: What You Should Know!

Essential thrombocythemia (ET) isn’t one-size-fits-all — different genetic mutations can affect risk and treatment.

What is ET?
Essential thrombocythemia is a rare blood cancer that causes your bone marrow to produce too many platelets. It begins in the hematopoietic stem cells — the master cells that create red blood cells, white blood cells, and platelets. In ET, genetic mutations disrupt normal signaling, leading to uncontrolled platelet production, which can increase the risk of blood clots or bleeding.

Common ET Mutations:
✔ JAK2 (50–60%) – Causes constant activation of JAK-STAT signaling, leading to a high platelet count and increased clotting risk.
✔ CALR (20–25%) – Affects megakaryocyte development, leading to more platelets but a lower clotting risk.
✔ MPL (3–5%) – Mimics excess thrombopoietin, resulting in uncontrolled platelet growth.
✔ Triple-Negative (10–15%) – No known mutation; requires further evaluation.

Why It Matters:
Knowing your mutation helps guide treatment — from low-dose aspirin to medications like hydroxyurea or interferon. Genetic testing is key!

💜 Understand your mutation = better care. Share to raise awareness!

17/07/2025

🎉 A moment of recognition for MPNs on the world stage! At this year’s ASCO (American Society of Clinical Oncology) Annual Meeting, one of the most prestigious events in cancer research, thousands of oncologists gathered for the plenary session which featured the results of a major phase 3 clinical trial for polycythemia vera (PV)!

Dr. Andrew Kuykendall presented findings from the VERIFY trial, which studied rusfertide, a new injectable therapy that regulates red blood cell production. PV patients often rely on repeated phlebotomies to manage hematocrit levels, but reports indicate that rusfertide dramatically reduced the need for those procedures while helping patients keep hematocrit under control. And fatigue, a top concern for patients, also improved.

✅ Better blood counts
✅ Less time spent in the clinic
✅ Fewer side effects than some traditional therapies

This could be a meaningful new option for many living with PV.

At MPN Research Foundation, we believe patients deserve more options and better outcomes. We’re proud to see PV research take center stage — and we’ll keep pushing for a future with more breakthroughs like this one.

16/07/2025

What if your doctor wasn’t just treating you — but also reshaping the future of care for everyone with MPNs?

Dr. Gabriela Hobbs, MD believes every sample tells a story, and every patient encounter is a chance to improve the system. In our latest Researcher Spotlight, discover how she’s turning leftover biospecimens into answers, challenging outdated assumptions about transplant eligibility, and making sure patients stay at the heart of every clinical decision.

Her vision? Smarter transplants now. Better options tomorrow. Care that never forgets the human side of science.

📖 Read the story: https://mpnresearchfoundation.org/news/every-sample-every-step-how-dr-gabriela-hobbs-is-rethinking-the-transplant-journey-in-mpns/

15/07/2025

We’re excited to announce a new partnership between the MPN Research Foundation and The Leukemia & Lymphoma Society (LLS) !

Starting now, patients can connect with a dedicated LLS Nurse Navigator to get one-on-one guidance through the clinical trial process — for free. From understanding your diagnosis to reviewing trial options and enrollment, expert support is just a click away.

👉 Learn more: https://mpnresearchfoundation.org/mpn-clinical-trials/

14/07/2025

Did you know?
MPNs are dynamic. They can slowly change over time in ways that aren’t always obvious.

For some people, that change shows up as more fatigue or new symptoms. For others, it might mean lower blood counts, more bone fibrosis, or a growing spleen. These are all ways the disease may be progressing, even if it hasn’t officially turned into a different disease state.

That’s why doctors recommend regular check-ins and keeping a close eye on how you feel. Changes in symptoms might be an early sign that your condition is shifting.

This is one of many challenges the forthcoming MPN PROGRESSion Registry™ hopes to address — collecting regular patient-reported and electronic medical records data over time with the aim of helping researchers and doctors arrive at better tools to act early and personalize treatments for each unique patient.

Sources: (NCCN MPN Clinician Guidelines 1.2025; Baumeister et al., 2021)

11/07/2025

When MJ Tooey was diagnosed with essential thrombocythemia (ET) 20 years ago, she had no idea the path ahead would require so much perseverance.

From treatment challenges to emotional fatigue, MJ has faced every twist with determination — and a commitment to staying informed. As a health sciences librarian, she brings research to every appointment, building a collaborative relationship with her care team. She is also a member of the MPN Research Foundation's Patient Impact Council, where she uses her experience and insight to advocate for others navigating similar journeys.

“It makes a big difference when you feel like you’re being treated as an equal in your own care,” MJ says.

You may not see the struggle, but MJ’s story shows the strength behind every MPN diagnosis.

Read her story here: https://mpnresearchfoundation.org/patient_stories/mj/

02/07/2025

Itching that won’t quit? You’re not alone.

In our 2024 Unmet Needs Survey, MPN patients named pruritus — the medical term for chronic itching — as one of their top reported symptoms. It was the second most common symptom among people with polycythemia vera (PV) and essential thrombocythemia (ET), and the fourth most common for those with myelofibrosis (MF).

For years, pruritus was considered to be a PV problem. But now evidence — and your voices — are making it clear: itching affects people across all MPNs, and it deserves more attention in both research and care.

Chronic pruritus can be exhausting. For some, water exposure, like in showers, can trigger painful itching. Studies show that MPN patients who report pruritus are also more likely to experience sleep disturbances, depressive symptoms, and thrombotic events. Yet, many patients say it’s rarely discussed in doctor appointments.

This is a clear unmet need in MPN care.

📣 If you’ve experienced this, speak up. Let your care team know. And keep raising your voice, because when patients speak, the science follows.

ualityOfLife

28/06/2025

A double tap against bad MPN signaling

Systems of molecular signals orchestrate when cells in your body will grow, divide, or rest. One of the most important systems is the MAPK pathway. In myeloproliferative neoplasms (MPNs), this system can get stuck in the “on” position, often due to a mutation in a gene called JAK2.

Doctors treat MPNs with medicines like ruxolitinib to block the JAK2 protein. And yet cancer cells can still find ways to keep the signal “on”. That’s why scientists are running a phase I/II clinical trial looking at combining ruxolitinib with another drug, ulixertinib, that could block the MAPK pathways further down the line. Targeting two points in the pathway might improve treatment, reduce side effects, and help prevent resistance.

Sources: (Meyer & Levine, 2014; NCT06773195; Stivala et al., 2019; Schnoeder et al., 2021; Brkic et al., 2021

26/06/2025

Living with myelofibrosis (MF) in the U.S.?

We invite you to take a brief 5–7 minute survey to share your experiences and insights as part of Mapping Myelofibrosis — a national GSK initiative to raise awareness, improve understanding, and connect the MF community with valuable tools and resources.

📝 Take the survey: https://www.tfaforms.com/5183605
🔒 Responses are confidential and used for research and education.

Your feedback will help inform future efforts to better support and engage people affected by MF. 💡 Learn more at mappingmf.com

Thank you for sharing your perspective — it makes a meaningful difference!

25/06/2025

We are sharing a new activity from Medscape. It is designed to help you apply evidence-based strategies when caring for patients with (MF).

Let the community's experts guide you through choosing the best for complex cases! https://goto.mpnresearchfoundation.org/4gN7XTu

24/06/2025

👏We’re proud to support the MPN Heroes Recognition Program — an initiative by Voices of MPN that honors individuals making a lasting impact in the lives of those affected by myeloproliferative neoplasms (MPNs).

This year, MPN Research Foundation’s Director of Patient Engagement, Sara Douglas, was invited to serve as a judge — helping to recognize and elevate voices across the MPN community.

As a longtime nurse and advocate, Sara knows firsthand how important it is to center patient experience in research, care, and education.

🎥 Hear more from her in this featured spotlight: https://www.facebook.com/share/v/1HpXxtNZPw/

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