MPN Cancer Connection

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MPN Cancer Connection Non-profit focused on improving MPN patient care. Founded by David Wallace.

We provide:
• Educational resources
• Patient support networks
• Research advocacy
• Awareness initiatives

Join us in empowering MPN patients and advancing treatments. MPN Cancer Connection (MPN-CC) is a 501(c)3 non-profit organization helping educate and empower MPN patients to become their own advocate by providing the necessary resources to learn about the disease. Funds raised are used to cover on going expenses in publishing the MPN Cancer Connection website and newsletters, researching & writing articles, reporting, traveling to MPN events, raising awareness while expanding resources for patients, caregivers and healthcare providers.

🧬 What does your MPN mutation really mean for you?At MPN Horizons 2026 in Paris, Dr. Claire Harrison explained how genet...
10/17/2026

🧬 What does your MPN mutation really mean for you?

At MPN Horizons 2026 in Paris, Dr. Claire Harrison explained how genetics helps us understand polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF).

A central message: Your mutations are an important part of your MPN story, but they do not tell the whole story.

Here are key takeaways for patients and families:

• Genetic does not necessarily mean inherited. Most MPN driver mutations develop during life in blood-forming cells. They are generally not passed to children. An inherited susceptibility to developing an MPN is a separate issue.

• Know your driver mutation. JAK2, CALR, and MPL help doctors understand the disease, assess risk, and guide care. These mutations can leave blood-cell growth signals switched on.

• Encouraging news for people with triple-negative ET. This means testing has not detected the usual JAK2, CALR, or MPL driver mutations. Triple-negative ET often has a favorable outlook, and some studies have reported better overall survival than mutation-positive ET. Individual risk factors and continued monitoring still matter.

• Allele burden is not “percent cancer.” Variant allele frequency, or VAF, measures the proportion of tested gene copies carrying a mutation. Its meaning depends on the mutation, the type of MPN, and the rest of your clinical picture.

• Your health beyond the mutation matters. Additional mutations, blood pressure, cardiovascular health, and other factors can affect risk. A genetic result alone cannot predict your future.

Dr. Harrison also emphasized that researchers are still working to understand why one person develops an MPN and another does not. Finding an association with a risk factor does not prove that someone caused their disease.

A useful question for your next appointment: “Which mutations do I have, and how do these results affect my monitoring or treatment?”

Understanding your results can help you take a more informed role in your care.

Visit our PV Reporter page for more conference coverage.



Learn more: mpncancerconnection.org

Del rincón de nuestros socios | From Our Partner Corner:¿Vive con policitemia vera (PV) o cuida a alguien que la tiene? ...
10/13/2026

Del rincón de nuestros socios | From Our Partner Corner:

¿Vive con policitemia vera (PV) o cuida a alguien que la tiene? Este evento es para usted.
Know a Spanish-speaking patient or caregiver with PV in the Tampa area? Please share this with them.

ESPAÑOL
PV in Focus: Centrados en lo que importa llega a Tampa, Florida. Todo el programa será en español.

Sábado, 7 de noviembre de 2026
8:30 a. m. a 2:00 p. m.
Se servirán el desayuno y el almuerzo

Temas del día:
- Resumen sobre la PV y opciones de tratamiento
- La perspectiva de un paciente
- Autodefensa: cómo hacerse escuchar en su atención médica
- Salud mental

Con la participación de oradores destacados de la comunidad de la PV.

👉 Regístrese en PVInFocus.com

ENGLISH
PV in Focus: Focusing On What Counts is coming to Tampa, Florida. The entire program will be presented in Spanish.

Saturday, November 7, 2026, 8:30 a.m. to 2:00 p.m. Breakfast and lunch provided.

Topics include PV treatment options, a patient's perspective, self-advocacy, and mental health.

Register at PVInFocus.com, and tag someone who should be there.

Could a blood sample someday help spot myelofibrosis earlier?Johns Hopkins researchers looked at two genes, HMGA1 and HM...
10/08/2026

Could a blood sample someday help spot myelofibrosis earlier?

Johns Hopkins researchers looked at two genes, HMGA1 and HMGA2, that act like volume k***s in blood stem cells. In people with MPNs, both were turned up, and highest in myelofibrosis (MF).

In platelet samples, HMGA1 rose from ET to PV to MF. In this study, high HMGA1 picked out about 86% of people with MF. HMGA1 seems linked to cells multiplying; HMGA2 to inflammation that may drive bone marrow scarring.

Nothing changes in care yet. This isn’t a test you can ask for, and larger studies are needed. Still, it’s a clue toward better ways to watch for MF, and maybe new treatment targets someday.

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the si...

FDX1 is associated with CALR abundance and JAK–STAT-related inflammatory signaling in myeloproliferative neoplasms
09/29/2026

FDX1 is associated with CALR abundance and JAK–STAT-related inflammatory signaling in myeloproliferative neoplasms

IntroductionMyeloproliferative neoplasms (MPNs) are driven by constitutive cytokine-receptor signaling, yet the metabolic programs associated with driver gen...

JAK2V617F Mutation in Ischemic Stroke: Bridging Hematology and Stroke Neurology
09/26/2026

JAK2V617F Mutation in Ischemic Stroke: Bridging Hematology and Stroke Neurology

Recent evidence suggests the JAK2V617F mutation may confer an elevated risk of ischemic stroke, likely mediated by systemic inflammation, abnormal cell activation, and endothelial dysfunction. The ...

09/14/2026

From our Partner Corner:

If you or a loved one are living with (PV) or (ET), join the upcoming MPN In Focus live event.

Here, you can meet others living with PV and ET and hear from several speakers on topics like treatment options, self-advocacy, and navigating MPNs and your mental health.

Upcoming events:
October 3rd – Atlanta, GA
October 24th – Phoenix, AZ

Find out more and register here: MPNInFocus.com

September is Blood Cancer Awareness Month, and tomorrow is MPN Awareness Day.To recognize both, MPN Cancer Connection is...
09/09/2026

September is Blood Cancer Awareness Month, and tomorrow is MPN Awareness Day.

To recognize both, MPN Cancer Connection is proud to introduce 👉A Guide to Polycythemia Vera (PV), a free educational resource for patients and caregivers.

Whether you are newly diagnosed or have lived with PV for years, this guide can help you better understand symptoms, blood counts, diagnosis, treatment options, and life with PV. It can also help you prepare for more informed conversations with your healthcare team.

📖 Read the guide online or download your free copy:
https://mpncancerconnection.org/2026/09/polycythemia-vera-guide/

Thank you to our generous supporters, PharmaEssentia, Incyte, and Takeda, for helping make this important patient resource possible.

Please share this guide with another patient, caregiver, family member, or support group. One share could help someone find information they need.

Explore our polycythemia vera guide to learn about PV symptoms, diagnosis, risk factors, treatment options, blood counts, monitoring, and living with PV.

“Can we engineer disease trajectories in MPNs?”That question from Dr. Alessandro Lucchesi stopped me.For years, much of ...
09/08/2026

“Can we engineer disease trajectories in MPNs?”

That question from Dr. Alessandro Lucchesi stopped me.

For years, much of the MPN treatment conversation has focused on controlling blood counts, reducing spleen size, easing symptoms, and lowering immediate risks. Those goals remain essential. But the discussion is becoming more ambitious:

Can we intervene earlier, match the right treatment to the right patient, and actually change where the disease is headed?

This will be the central focus of RiseMPN 2026, taking place November 6–7 in Rome, Italy.

We now have more tools in the MPN arsenal. JAK inhibitors, interferons, hepcidin-axis treatments, epigenetic therapies, p53/MDM2 strategies, activin ligand traps, and other investigational approaches are expanding the possibilities.

The next challenge is determining:

• Which treatments or combinations can truly modify disease biology?
• Which patients are most likely to benefit?
• When is the best time to intervene?
• Can we delay or prevent progression rather than responding after it occurs?

Having more treatments does not automatically mean we are changing the natural history of an MPN. That still has to be proven through strong clinical research. But I am impressed that the conversation is moving beyond symptom control and asking a much bigger question: Can we deliberately change the trajectory of these diseases?

That is the direction patients have been waiting for.

Thank you to Dr. Alessandro Lucchesi for sharing this thoughtful perspective and helping move this important discussion forward. I will be watching RiseMPN 2026 closely and sharing meaningful developments with the MPN community.

Learn more: https://risempn.org

Can we engineer disease trajectories in MPNs? Rome, 6–7 November 2026.

From our Partner Corner: Unite to Nourish: Learning About MPN NutritionTuesday, September 29, 2026This webinar is design...
09/02/2026

From our Partner Corner:

Unite to Nourish: Learning About MPN Nutrition

Tuesday, September 29, 2026
This webinar is designed for individuals living with MPNs and their caregivers who are interested in learning more about the role of nutrition in supporting overall health and well-being.
Topics will include:
• Why nutrition is important for people living with MPN
• Which foods and eating patterns may be helpful for people living with MPN
• How nutrition can help address common symptoms and treatment-related concerns
• Practical strategies for maintaining adequate nutrition and hydration
• Answers to participant questions during a live Q&A session with a registered dietitian
Weblink to Register:

Watch these videos on how to manage the most common cancer treatment side effects with a healthy eating regimen.

EXPLORE MPN CLINICAL TRIALSNew treatments for MPNs are being studied every day.The FREE MPN Clinical Trial Finder from P...
08/24/2026

EXPLORE MPN CLINICAL TRIALS

New treatments for MPNs are being studied every day.

The FREE MPN Clinical Trial Finder from PV Reporter helps you search for trials by your MPN:

🔴 Polycythemia Vera (PV)
🟠 Essential Thrombocythemia (ET)
🔵 Myelofibrosis (MF)

Search by MPN type, location, trial phase, recruitment status or treatment. Trial information comes directly from ClinicalTrials.gov.

Find a study that interests you and discuss it with your hematologist. Once you click on a trial and then "show details," you will see a "Print for Hematologist" button that provides all the key highlights of the trial.

Check out the MPN Clinical Trial Finder today - https://pvreporter.com/mpn-clinical-trial-finder/

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