MPN Research Foundation

From Uncertainty to Clarity

“Before there was just uncertainty,” describes Ben Hohenbrink, about his early MPN experience. Because of new genetic testing, Ben finally received a clear diagnosis after years of doubt. One genetic test turned out to be a game-changer, but many patients still wait for answers.

This Blood Cancer Awareness Month help us bridge the gap between scientists and patients so research findings can bring clarity to more people like Ben.

Your donation turns uncertainty into hope! https://mpnrf.info/3AGOeWq

👉 Join the MPN community today: https://mpnrf.info/4dSBEBD

Thank you to GSK , Incyte , and for your generousity this Blood Cancer Awareness Month.

Kapila, our CEO, talked recently with Lynda Carter, American actress, singer and star of the live-action TV series Wonder Woman, who lost her husband Robert Altman 3½ years ago due to progression of MPN.

Lynda described her motivation to co-write and release her heartfelt single, “Letters from Earth,” a tribute to her late husband.

Listen here: https://mpnrf.info/lettersfromearth

“John Jarvis and I wrote it together. It was inspired by me writing down my thoughts about how to communicate with my wonderful husband ... and how you communicate about all the small things in your daily life that you miss with your loved one.”

This Blood Cancer Awareness Month, we're uniting to create connections that will drive innovative solutions and seed the next breakthroughs in MPN research. Join our community by subscribing to our mailing list and stay informed on how you can help make a difference.

Join our growing community today: https://mpnrf.info/4dc1CPY

How is an MPN different than other blood cancers? Myeloproliferative neoplasms (MPNs) are chronic cancers. Different from acute blood cancers, such as many leukemias, Hodgkins or non-Hodgkins lymphomas, MPNs are a result of the bone marrow continually producing cancerous blood cells, most often for a person’s entire life.

Medications can manage chronic cancers such as essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF) for many years. However, these conditions can sometimes progress to more severe forms, like acute myeloid leukemia, which requires immediate, life-saving treatment. While research is continually advancing, making new treatments available, a stem cell transplant remains the only potential cure. Living with chronic cancer presents unique challenges, such as long term management.

Learn more by joining our community today! https://mpnrf.info/4dSBEBD

Research helps clinicians diagnose MPNs with precision

“First of all, I think it’s very important in definitively making a diagnosis of MPN,” Dr. Ann Mullally, a leading physician at Stanford Medicine said about the discovery of an MPN-related genetic mutation. Mullally remembers how previously, even after biopsies, clinicians could be left with unanswered questions.

Thanks to your support, research funded by MPNRF has given clinicians like Dr. Mullally the tools they need to more accurately diagnose MPNs. This breakthrough not only transformed clinical practice but also improved patient care.

Together, we can ensure more groundbreaking discoveries make their way into clinics, giving patients clearer diagnoses and brighter futures. Join our community today to learn more about how you can contribute to the future of research.

Subscribe here: https://mpnrf.info/4dSBEBD

Calling all health care professionals! PEN is hosting an EPEP MPN webinar entitled “HCP Roundtable: Advancing Practice and Enhancing Myeloproliferative Neoplasm Care” on September 17th at 1pm ET (10 AM PT, 12 PM CT).

How can healthcare providers overcome current challenges to enhance the management and outcomes of myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET)? What innovative practices are transforming the management of myeloproliferative neoplasms to improve patient outcomes?

Join Dr. Akriti Jain of Cleveland Clinic and Nurse Practitioner Kimberly Smith of Duke Health, as they look at gaps in the field and solutions to enhance patient-centric MPN care for improved patient outcomes.

You can learn more about this webinar here: https://bit.ly/3yE68s6

What do you want everyone to know about MPNs? Comment below to start the conversation.

Today marks the 12th annual MPN Awareness Day, dedicated to bringing attention to Myeloproliferative Neoplasms (MPNs). This is our chance to unite. Whether you’re a patient, caregiver, researcher, or part of the healthcare community, your voice is powerful.

Share your experiences using , educate yourself, your friends and loved ones with our resources, and consider donating to support MPN research. Every effort brings us closer to life-changing breakthroughs.

Today’s Intro to MPNRF and MPNs 101 webinar registration: https://mpnrf.info/4cOuuxm

Join our community of over 20,000 people: https://mpnrf.info/3AGOeWq

Invest in MPN research today and be a part of the solution! https://mpnrf.info/3AGOeWq

A huge thank you to the generous sponsors who support our mission to build collaborative bridges for the next breakthrough in MPNs. GSK Incyte

Introduce yourself to the MPN Community below!

At the heart of the MPN community is a shared commitment to understanding myeloproliferative neoplasms (MPNs) and finding impactful solutions for those living with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Our unique role within the MPN landscape enables us to build vital bridges between patients & caregivers, researchers & health care professionals, and members of the biopharmaceutical industry.

By fostering these collaborative relationships, we accelerate opportunities for breakthrough discoveries, leading the way to innovative solutions and improved outcomes for all those affected by MPNs.

Want to be part of the solution with us?

Donate today and be a part of the 600 people supporting our BCAM goal. https://mpnrf.info/3AGOeWq

Or Subscribe to our mailing list and be in the know on the latest MPN resources, tools, and research updates. https://mpnrf.info/4dSBEBD

Thank you to our sponsors GSK , Incyte , and for your generosity in supporting us this Blood Cancer Awareness Month.

What is an MPN?

MPNs are myeloproliferative neoplasms, a group of rare, chronic blood cancers. The classic MPNs are essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). And there are others.

MPNs are cancers of the bone marrow, which is responsible for forming red blood cells, white blood cells, and platelets. In ET, the bone marrow produces too many platelets. PV is when too many red cells are produced. MF can be a progression from ET or PV, called secondary MF, or it can be primary MF, meaning it is diagnosed without a known MPN before it. Myelofibrosis is considered the most life-threatening of the MPNs, with one, two or all three types of blood cells below normal levels. A hallmark sign of MF is fibrosis (scarring) in the bone marrow, which can only be identified through a bone marrow biopsy.

Learn more about MPNs, common symptoms, and the latest research and treatment options. Register today for our upcoming webinar series MPN Pathways: Empowered Voices in Research. https://mpnrf.info/3WIGYR0

Or Donate today and be a part of our BCAM goal to connect with 600 donors throughout September: https://mpnrf.info/3AGOeWq

Thank you to our sponsors GSK , Incyte , and for your generosity in supporting us this Blood Cancer Awareness Month.

Thank you GSK for allowing us to bring the voice of our MPNRF community to the conversation during 2024 Frontiers in MPNs Summit in Poland! It was an honor to have our very own Assoc. Director of Patient Engagement, Sara Douglas, on the stage among the brilliant MPN experts discussing how to achieve equal and equitable access to expert care, information and support for patients, treatments, and clinical trials and research.

Join our community, share your story, and help us make a difference in MPN Research. https://mpnrf.info/4dSBEBD

From patient samples to groundbreaking discoveries!

Behind every scientific breakthrough is a story of collaboration. It was only after spending hours and days pouring through reams of DNA information provided by MPN patients that Jyoti discovered a new MPN mutation. This was all possible thanks to the dedication of scientists, patient engagement, and research funding. With discoveries like these we're on our way towards improving diagnostics, treatments, and care.

This year Blood Cancer Awareness Month, we are looking for 600 donors to come together to help us meet our goal of $150,000 by Sept. 30th.

Can we do it?

Only with your help.

Support researchers like Jyoti and bridge the gap between patients and scientists.

Donate today and help us better understand MPN. https://mpnrf.info/3AGOeWq

Thank you to our sponsors GSK , Incyte and for your generosity in supporting us this Blood Cancer Awareness Month.

Blood Cancer Awareness Month (BCAM) is here!

Join us this September as we expand awareness of how collaboration across our incredible MPN community of patients & caregivers, researchers & health care professionals, biopharmaceutical industry, and advocacy organizations can make real beneficial impact and drive opportunities for the next big breakthrough in MPN research!

How can you play your part this BCAM?

👉 Share your story with us using so we can reshare them.

👉 Expand your knowledge through our tools and resources and those of our partners. https://mpnrf.info/3WIGYR0

👉 Invest in research and consider donating today! https://mpnrf.info/3AGOeWq

Thank you to our sponsors GSK , Incyte, and for your generosity in supporting us this Blood Cancer Awareness Month.

It is with heavy hearts that we share the news of Zhenya Senyak's passing. Zhenya was a tireless advocate for the MPN community, the voice behind the MPN Forum, and a champion for patient education and research. His dedication, vision, and passion have left a lasting impact on all of us.

Zhenya's work reached far beyond advocacy—he was an innovator, a mentor, a friend, and a man of many talents. From advancing groundbreaking research to sharing his love for music and cooking, he touched countless lives.

Zhenya, your legacy will live on in the lives of the MPN patients you helped and the community you built. You will be deeply missed but never forgotten.

Rest in peace, dear friend.

https://mpnresearchfoundation.org/news/remembering-zhenya-senyak/

With Blood Cancer Awareness Month right around the corner, staying informed is staying empowered!

Join the MPN Research Foundation community by subscribing to our updates!

Here's why it matters:

For Our Mission: You joining our community helps us connect patients, caregivers, clinicians, researchers, and industry professionals, fostering collaboration and driving progress in MPN research.

For You:

👉Exclusive Insights: Get the latest research updates and advancements, clinical trial information, and more.
👉Community Connection: Engage with a supportive network of individuals who share your journey.
👉Educational Resources: Access webinars, expert Q&As, and informative articles to stay informed and empowered.
👉Stay connected, stay empowered. Subscribe today and be a part of the solution!

Subscribe Now: https://mpnrf.info/4bZzVKu

Highlighting a Hero in MPN Research: Dr. Marina Kremyanskaya!

We're thrilled to shine a spotlight on Dr. Marina Kremyanskaya, a leading researcher at the Icahn School of Medicine at Mount Sinai, who's making groundbreaking strides in Myeloproliferative Neoplasms (MPNs) research.

Her focus on the CALR mutation could revolutionize treatments for these rare blood cancers.

Dr. Kremyanskaya's work is all about taking discoveries from the lab and turning them into real-world treatments. Her patient-centered approach ensures that every step is taken with utmost care for those involved in her clinical trials. This innovative research, supported by the MPNRF 2022 Thrive Initiative award, aims to harness the human immune system to target mutant CALR in MPNs.

How does Dr. Kremyanskaya bridge the gap between lab discoveries and real-world applications?

The MD, PhD’s combo of empathy and curiosity might be her secret weapon against rare blood cancers. Let's celebrate her passion and commitment to making a difference! 🙌

Read more: [link here]

Diving into the Genetics of MPNs

Did you know that MPNs are closely tied to mutations in specific genes? The three main mutations, called disease driver mutations—JAK2, CALR, and MPL—play a crucial role in MPN blood cancers.

Disease Driver Mutations vs. Clonal Mutations: Cancer cells are unstable. As they divide to produce clones of themselves, those clones end up with a wide range of genetic characteristics. Clonal mutations are genetic changes found in cancer-associated cells.

Three MPN clonal mutations are so influential, thought by scientists to cause or initiate MPNs, that they’re called disease drivers.

Other MPN-related clonal mutations seem to interact and impact these disease driver mutations while not being capable of triggering MPNs on their own.

The three primary mutations seem to be connected to the excessively high activity of a protein called JAK. The JAK2-V617F mutation is found in over 95% of polycythemia vera (PV) patients and around half of those with essential thrombocythemia (ET) or myelofibrosis (MF).

Interestingly, in some MPN cases, even when no known disease driver mutations are detected (triple-negative MPNs), the hallmark JAK hyperactivity is still present.

Understanding the genetics behind MPNs is vital for advancing targeted treatments and improving patient care.

Join us as we explore new insights and support MPN Research Foundation! https://mpnrf.info/4bZzVKu

Source:
Ding, et al., 2013 - https://www.sciencedirect.com/science/article/abs/pii/S0304383513000347

Paz, Kralovics, & Skoda, 2023 - https://doi.org/10.1182/blood.2022017578

Elf et al., 2016 - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851866/

Are you ready to make a real difference in MPN research?

Join our : Empowered Voices in Research certification program!

This program is designed to educate and empower MPN patients and caregivers, providing you with the tools and resources to influence MPN research and advocacy. You can find all the information you need on our website: https://mpnrf.info/3WIGYR0

In honor of Blood Cancer Awareness Month coming up, we will be launching the first virtual session on MPN Awareness Day!

What: Intro to MPN Research Foundation and Myeloproliferative Neoplasms 101
When: Thursday September 12 @ 5PM-6PM CDT
How: Register here: https://us02web.zoom.us/webinar/register/6017225239969/WN_HIK9AY_zT-KpOvKXNSnBQg

Don't miss out on this opportunity to learn from experts and connect with a community of like-minded advocates.

Thank you to our sponsors: , , , and and collaborators .

Robert Greenbaum married his high school sweetheart in 1990 after graduating from Cornell University. He didn’t know she would be his unfaltering rock through the high peaks and low valleys of a challenging path from essential thrombocythemia (ET) to acute myeloid leukemia (AML), and ultimately a successful stem cell transplant.

Robert is a member of MPN Research Foundation’s Patient Impact Council and shares his personal story and his commitment to help other patients.

Join our community to read more about Robert’s story: https://mpnrf.info/4bZzVKu

Exciting Summer Update!

Dive into the latest advancements in myeloproliferative neoplasm (MPN) research with our Summer 2024 newsletter!

From groundbreaking studies to insightful patient stories, our community is at the forefront of making real change for those directly affected by essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Join our community now to stay informed and be part of the journey toward research advancements with real beneficial impact!

Be the first to get access to our upcoming Fall newsletter and more exciting updates.

Let's make a difference together! https://mpnrf.info/4bZzVKu

Comment below your answer to the following question:

When were you or a loved one diagnosed with an MPN?

👉 within the last 6 months

👉 within the last year

👉 within the last 2-5 years

👉 within the last 5-10 years

👉 over 10 years ago

Here at MPN Research Foundation, we see you and want to support you in your journey through driving research that creates real beneficial impact for all those living with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Want to share your story further? Join our community today! https://mpnrf.info/4bZzVKu

A recent medical discovery has revealed something truly unexpected: a 1-year-old girl diagnosed with essential thrombocythemia (ET). Both the young patient and her mother had the JAK2 R564Q mutation, a rare genetic finding associated with an inherited version of ET.

This discovery is notable as it marks the second report of inherited ET linked to the JAK2 R564Q mutation and the first detailed bone marrow findings in such a young patient.

This discovery highlights the complex nature of MPN and emphasizes the need for ongoing research into the genetic causes of these conditions, even in very young individuals.

Read more here: https://mpnrf.info/4ciucyF

Stay up to date on the latest MPN Research news by joining out community: https://mpnrf.info/4bZzVKu

Exciting News from MPN Research Foundation!

We’re thrilled to introduce the MPN Pathways: Empowered Voices in Research Program in collaboration with ! This 2-year virtual initiative is designed to empower MPN patients and caregivers to become influential voices in MPN research.

📚 Gain a thorough understanding of MPNs

🤝 Connect with a supportive network of peers and experts

🎓 Earn a certification in MPN research advocacy

First Session: Intro to MPN Research Foundation & Myeloproliferative Neoplasms 101

📅 Date: Thursday, September 12th, 2024

🕔 Time: 5 PM Central Time

🔗 Register here: https://us02web.zoom.us/webinar/register/6017225239969/WN_HIK9AY_zT-KpOvKXNSnBQg

Can’t attend live? No worries, all sessions will be recorded and sent to all registrants!

Join us and become a certified MPNRF research advocate, making a real impact on MPN research. We look forward to seeing you there!

And thank you to our sponsors for this initiative and .

Are you a high-risk PV patient? Consider participating in the GIV-IN PV trial comparing givinostat and hydroxyurea. This study could help develop a new treatment.

Check if you qualify: https://clinicaltrials.gov/study/NCT06093672?term=givinostat&page=2&rank=15

Contact [email protected] for more information.

The July edition of “Under the Microscope” hit your inboxes at 5PM CT today!

This digest includes:

👉 Clinically inspired research: Inside Dr. Tania Jain’s MPN Challenge™ project

👉 's patient journey

👉 Becoming a certified research advocate

👉 and more!

Join our community today to receive these stories and so much more with this link: https://mpnrf.info/4bZzVKu

True or False? Interferon is a safe treatment option for pregnant women with myelofibrosis (PMF).

Managing PMF during pregnancy involves complex decisions. While interferon is used in some cases, its safety in pregnancy remains uncertain. At MPNRF, we are committed to supporting research that addresses the needs of all MPN patients. That means we need to hear from you! Share your experiences and help us improve care options!

Find the answer in the comments below!

The source of our fun fact: Robinson, S., Ragheb, M., & Harrison, C. (2024). How I treat myeloproliferative neoplasms in pregnancy. Blood, 143(9), 777-785. https://pubmed.ncbi.nlm.nih.gov/38145575/

Do you or someone you know struggle with sleep disturbances due to blood cancer? Researchers at are seeking US-based adults for an 8-week digital study. Participate remotely and help advance research!

Learn more: https://cancer.uthscsa.edu/heme-study

Take the screening survey: https://redcap.link/hemescreening

A will not only ensures your assets go to the people and causes you care about, but it also offers personal benefits. Including a gift to a cause you love, like ours, can reduce anxiety, provide perspective, set a positive example, and bring a sense of fulfillment.

Visit https://plannedgiving.mpnresearchfoundation.org/ for more information on how you can support MPN research.

Being an MPN caregiver is challenging, but you’re not alone.

Sara Douglas (MPNRF's Assoc. Dir. of Patient Engagement) and Dana Turner (MPNRF's Patient Impact Council) teamed up with to create a guide on managing symptoms, attending medical appointments, and emotional support.

Connect with a community that understands and access essential resources.

Download the caregiving guide: https://www.cancersupportcommunity.org/resource/caregiving-mpns

Pinpoint Patient Recruiting is offering an opportunity for US-based adults diagnosed with myelofibrosis to participate in a 75-minute online interview.

Your insights will help researchers understand patient experiences and treatment decisions. Eligible participants will receive $125.

Visit: www.pinpointpatientrecruiting.com/myelofibrosis-interview or contact Julie at [email protected] for more info.