2018 Annual Report
The MPN Research Foundation is proud to present the Annual Report for the fiscal year 2018. If you have any questions about the information presented here, or would like a printed copy, please email Pam Soto at email@example.com
The BOARD CHAIr's MESSAGE
Reflecting on 2018 is bittersweet. The year started with something no one here at the MPN Research Foundation was emotionally prepared for - the loss of our founder and leader, Robert Rosen. Robert (Bob) passed away in January 2018 after his polycythemia vera (PV) progressed to myelofibrosis (MF) and unexpectedly developed acute myeloid leukemia (AML), which proved unresponsive to treatment. Bob was an incredible friend and mentor to many who serve on the Board of Trustees. He recruited most of us to this cause and has guided many others on their quest to find information, knowledgeable doctors, and the right course of treatment for their MPN. Bob is sorely missed, but the incredible legacy he left behind will endure because of the commitment and service of the board and staff at the organization he created.
Our board is comprised of people intimately connected to our mission - either MPN patients themselves or a friend or family member of a patient. Bob wanted it that way. He believed that the job of the board is to represent the patient perspective, something that can get lost in the lab and in the ongoing effort to raise money for research. At first, the organization actually had more money coming in than research projects to fund - a frustrating and challenging problem that took years to resolve. Not only did we have to raise the money to fund MPN research, but we had to find a way to spark interest in the research community. Luckily, the tide has turned. Now we face a landscape full of projects we think to have the potential to change the prognosis of MPN patients everywhere, and nowhere near the funds available to fund them all. Our grants program now draws a robust pool of applicants and each year we have to make the hard choices of where to invest our precious resources, which are so generously provided by individuals in the MPN community and by our corporate partners.
This new reality makes the choices Bob made about this organization even more important in hindsight. How the board makes decisions in this period of growth and change is incredibly important to the long-term health of MPN patients everywhere, and we take that responsibility seriously. We all learned a valuable lesson from Bob that the work we do can leave a positive and lasting legacy that truly touches people’s lives. We are committed to carrying on in Bob’s memory, to finish the work that he started so that MPN patients everywhere can have hope for a cure. We encourage everyone in the MPN community to join us as we try to be like Bob.
Board of Directors for 2018:
Dave Boule, Treasurer
JoAnn Mason, Secretary
Lisa G. Bretones
Molly Rosen Guy
Report From The Executive Director
Last year marked a period of growth for the MPN Research Foundation. We took several steps to expand our reach within the patient community and identified a few areas that needed our attention and intervention in order to advance our cause. In an effort to provide more support for patients, better communicate our mission to the world, and to provide more dedicated and expert oversight to our research programs, we created two new roles within the organization - the Community Engagement and Outreach Coordinator and the Director of Scientific Strategies. Having additional staff dedicated to these two critical areas of our work very quickly made a difference, and created more opportunities for us to engage with those in the patient and research communities.
While exploring the unmet needs in our community, we also found an opportunity to create more awareness about MPN for the Food and Drug Administration (FDA). In the fall of 2018, the MPN Research Foundation decided to dedicate both time and resources to hosting an externally-led Patient-Focused Drug Development meeting, a mechanism for the FDA to engage with patient communities about drug development directly. This meeting will take place in the fall of 2019, and we look forward to sharing the results with you this winter.
In an effort to expand our reach, the MPN Research Foundation also began to foster and leverage inter-organizational partnerships. While we may have limited resources, partnering with organizations around the world to communicate our mission and even to co-fund research initiatives allows us to do more than ever before. We look forward to creating more partnerships and co-funding opportunities in the future and also look forward to creating opportunities for collaboration within the research community as we did with the Interferon Initiative.
Our focus remains on using our influence to improve outcomes for people living with PV, ET, and MF. We select how to do this best by always keeping the patient in mind and involved in all levels of the organization. We hear from thousands of patients every year who are looking for answers, and their priorities are what drive our decisions at an organizational level. Our investments are not only about what’s right for the research community. We try to balance what’s new and exciting against what will bring relief to patients now.
Our work could not happen without the support of the MPN patient community and their friends and families. We know that the better therapies and even cures that people with PV, ET, and MF need are out there. We will continue to use the power of the thousands of people who so generously contribute each year to invest wisely in the research, education, and advocacy that improves lives now and drives to better treatment options and eventually a cure.
OUR MISSION and history
The mission of the MPN Research Foundation is to stimulate original research in pursuit of new treatments -- and eventually a cure -- for the blood cancers polycythemia vera, essential thrombocythemia, & myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).
Through a combination of MPN cancer research, advocacy, and education, we bring together patients, researchers, & clinicians around the common goal of realizing new treatment options and ultimately, a cure for MPNs.
In 1999, Rosen and a small number of other MPN patients established the MPN Research Foundation (at the time known as MPD Foundation) as a way to catalyze research for advanced treatments for MPN patients. To date, the MPN Research Foundation has awarded more than $13 million for MPN cancer research, focusing on projects that accelerate our understanding of MPNs and lead to the development of new treatment options.
Our history as an organization that was founded by patients for patients continues to influence everything we do. In addition to funding promising MPN research, we work to educate and empower patients, family members, doctors, and researchers across the MPN community. Together, we’re committed to change the prognosis for people living with an MPN.
The past few years have been a time of growth and change for the MPN Research Foundation. In just the last two years our staff has grown by 100%, doubling from four to eight paid staff members. The decision was made to expand staffing in order to meet the ever-growing needs of the MPN community, and the expanding portfolio of research initiatives approved by our board. We are excited by this growth and look forward to celebrating our 20th anniversary year at the end of 2019.
The MPN Research Foundation is proud to play a vital role in the MPN community. We’re committed to working alongside researchers and physicians to provide comprehensive support for MPN patients and their families, offering the advocacy, education, and resources needed to find hope for a better tomorrow.
Our goal is to empower patients to be their own best advocates. We encourage them to educate themselves about their disease, and we provide a trustworthy hub that connects to the wider community. Most importantly, we strive to educate patients about the research and drug development pipeline and encourage participation in clinical trials. Our efforts are aimed at engaging the patient community in the search for a cure.
We reach patients in a variety of ways:
- Support groups, both in person throughout the US and online
- Monthly emails, social media, Cancer Connect, and a bi-annual newsletter
- Collaboration with groups like MPN Advocacy and Education, Intl, Cancer Support Community, Leukemia & Lymphoma Society, and Patient Power
- Research partnership with MPN Alliance Australia around MPN Interferon Initiative and plans to partner with MPN Voice to launch myMPN in England
- Utilization of nationwide campaigns, such as Blood Cancer Awareness Month and Rare Disease Day, to drive awareness and action among patients and caregivers
- Social media campaigns that encourage patient engagement and interpersonal relationships in the MPN community
- Patient education materials are made available for free through our website or in hard copy by request
In 2018, the MPN Research Foundation:
The MPN Research Foundation funds a variety of projects and initiatives that seek to better understand and treat myeloproliferative neoplasms (MPNs). Below is a full list of our programs with a description of how they progressed during the 2018 fiscal year.
The MPN Challenge Grants program
The MPN Challenge Grants program is the main driver in our efforts to fund research in pursuit of our mission. Funded in collaboration with an organizational partner, the Leukemia and Lymphoma Society (LLS), these grants offer recipients $100,000 grants with the option of renewal for a second year if sufficient progress has been made. Since our inception, the goal of this program has been to deliver much-needed funding to academic researchers that are focused on the area of myeloproliferative neoplasms. To date, the MPN Research Foundation has awarded over $13 million to over 60 different research projects. This infusion of funds into a previously under-researched area has created momentum in the search for new treatments and a cure.
Specific outcomes from our Challenge Grants program include:
- Discovery of the CALR mutation, found in 73% of JAK2 and MPL negative MPN patients.
- Creation of the first large-scale tissue bank and associated data bank at the Mayo Clinic, enabling rapid testing of new JAK2 inhibiting drugs.
- Enabled pre-clinical studies of JAK inhibitors in animal models of MPN.
- Development of a knock-in JAK2V617 mouse model that enabled the identification of an MPN stem cell population that is not affected by JAK2 inhibitors. Elimination of these cells will be necessary for a cure.
- Continued research on the TET2 mutation and the effects of TET2 loss on MPNs, establishing the precise frequency of the TET2 MPN mutation and its correlation with the MPN phenotype.
- Identification of Ikaros and CUX1 as genes that are lost during progression to AML, possibly leading to new targets for therapeutic intervention.
- Data submitted to DBGAP -- the first full genomic sequencing project for MPN patients that requires data to be deposited in a publicly accessible database for qualified scientists to study and evaluate.
- New investigators motivated to enter the field, helping to assure their lifelong commitment to MPN research. Our funding empowered a number of researchers to receive future government and private grants and positioned them to emerge as leaders in the field.
In 2018 the MPN Research Foundation renewed all of the 2017 grantees for the second year of funding. Their projects and links to more information about their work can be found below.
Characterizing Myeloproliferative Neoplasm Neoantigens and T Cell Responses for Therapeutic Applications
Immunotherapy Research Focused on Uncovering Novel and Potentially Curative Therapy Targets for MPN Cancer Cells
Drs. Oehler and Bleakley are characterizing MPN neo-antigens and T cell responses. This is essential work needed to follow through on creating T Cell therapies (therapy vaccines and T-Cell Receptor) for MPN. This work was entirely novel and new to the investigators when they applied for the grant, forging a new partnership focused on MPN. They completed one antigen discovery experiment and a second is underway. They hope to leverage their experience in AML for use in MPN.
Inhibition of Deubiquitinating Enzymes as a Novel Targeted Therapy for JAK2-Dependent Myeloid Malignancies
Novel Therapy Target Research for MPN Cancer Cells
Dr. Griffin’s project is to target deubiquitinating enzymes (DUBs) that regulate JAK2V617F stability; inhibition of DUBS leads to preferential degradation of mutant JAK2. His group has studied two independent chemical series and have observed some specific targeting of the JAK2 mutation. Currently, they are using a CRISPR approach to further isolate the DUB target of the compounds. They have not yet tested the activity of these compounds in the animal models, but that is expected to move forward soon once the CRISPR study has revealed the critical DUBs. They have already received additional support for this work from their institution, proving the value of our initiating funds to kick off work with potential.
Leveraging NFKB Pathway Dysregulation for Therapeutic Benefit in Myeloproliferative Neoplasms
Translational Research Resulting in Potential Near-Term Clinical Trial with Goal of Clinical Impact
Dr. Oh’s project is to target the NFkB pathway in the MPNs with a drug that hasn’t yet been tried in MPN. His group has confirmed that this drug targets the NFkB pathway and restricts the growth of an MPN cell line and patient cells. They are currently working on testing this drug in mice and expect to have results from this study in the next six months.
Inflammation as a Driver of Clonal Expansion in Myeloproliferative Neoplasm
Focus on Food and Nutrition Changes to Improve Quality of Life for MPN Patients Including Research on Over-the-Counter Supplement Costing Only $20.00 for 4 Month Supply
Dr. Fleischman’s goal is to determine how JAK2 mutated cells react to inflammation in comparison to normal blood-producing cells. If inflammation plays a role to accelerate the progression of MPN, this study would help define possible pathways to suppressing this inflammation.
Functional and Molecular Dissection of the Fibrotic Transformation and Clonal Selection in Myeloproliferative Neoplasms
Using CRISPRCas9 gene editing techniques, Dr. Schneider aims to determine whether the S100A8/S100A9 molecule contributes to the growth of bone marrow fibrosis and loss of normal blood production. If confirmed, this presents a possible therapeutic target for drug development. Assessment is ongoing for this project and will be available in 2019.
In addition to the MPN Challenge Grant projects, we also funded the NUTRIENT (NUTRitional Intervention among myEloproliferative Neoplasms) Trial, which will develop a diet rich in anti-inflammatory properties and enroll 30 MPN patients who will be checked for cytokines and JAK2 burden as well as symptoms. This study will be jointly conducted by Robyn Scherber (Oregon Health Sciences University), Angela Fleischman (University of California, Irvine) and Ruben Mesa (University of Texas, San Antonio).
myMPN was launched in September 2017, and the number of participants has grown quickly. Patients (aged 18 or older) can enter demographic information and disease history, record their symptoms, document experiences with different therapies, and log information about health events such as blood draws, transfusions, hospital stays, pregnancies, thrombotic events and more. Participants can also learn about clinical trials and, if interested, share their data with researchers interested in finding better therapies to treat MPNs and the specific symptoms associated with them. This is a research tool that we hope will lead the way to new therapies for people with MPN and a better understanding of what therapies work best with which population (and at which time). It is important - especially for rare diseases like polycythemia vera, essential thrombocythemia, and myelofibrosis - to get involved in as many ways as possible and myMPN offers a new way for patients to share their unique journeys with MPNs and make their needs known to the world.
The registry is overseen by MPN Research Foundation staff member Lindsey Whyte and a steering committee of MPN clinicians and researchers:
- Ruben Mesa, M.D., Chairman, Mays Cancer Center at UT Health San Antonio MD Anderson
- Robyn Scherber, M.D., Mays Cancer Center at UT Health San Antonio MD Anderson
- Claire Harrison, M.D., Guys and St. Thomas’ Hospital, London
- Srdan Verstovsek, M.D., PH.D., MD Anderson, Houston
- Amy Lou Dueck, PH.D., Mayo Clinic, Pheonix
- Alison Moliterno, M.D., Johns Hopkins Hospital, Baltimore
- Camelia Iancu-Rubin, M.D., Mt. Sinai Medical Center, New York
- John Mascarenhas, M.D., Mt. Sinai Medical Center, New York
By the end of 2018, 750 patients had registered with myMPN and completed the primary survey. Many continued to engage with the platform by filling out additional symptom assessment and event surveys. Our most active participant completed over 40 “How do you feel, today?” surveys since joining the registry!
With participation levels high enough to start producing data sets, the MPN Research Foundation was invited to present a poster at the European Hematology Association annual meeting (June 2018) and at the 11th Annual Congress of MPNs in New York (October 2018). You can view both posters by clicking here.
The Interferon Initiative
The MPN Interferon (IFN) Initiative is a three-year program that was launched in December 2017. The goal is to work collaboratively to understand the mechanism of action of IFN in achieving remissions in MPN patients. This should lead to better patient selection for IFN therapy and possibly new drug targets. The Initiative is currently centered around four active projects, the principal investigators and a group of MPNRF staff and advisors who have been working together to track progress and promote collaboration over the course of the last year.
The projects have annual milestones and are tracked during conference calls that occur every 3-4 months leading up to an in-person meeting at the American Society of Hematology (ASH) annual meeting. The project presentations and discussions at the 2nd annual meeting at the 2018 ASH along with a one-page summary for each project were used for justifying renewals and all 4 projects are continuing for the 2nd year. Highlights from the 2018 annual meeting for each of the projects are summarized below
Overcoming resistance to interferon in MPN stem cells – Ann Mullally, (Boston MA) Steven Lane, (Brisbane, Australia) and Michael Milsom, (Heidelberg, Germany). Model systems have been validated to study the effect of IFN treatment on the stem cell profile in a variety of gene mutation inducing models of myelofibrosis. One mechanism under study is the DNA damage response to IFN. Patient samples from an interferon clinical trial are being sequenced for approximately 100 genes to further understand patient responses to long term IFN treatment.
Mechanism of action of interferon alpha in MPN therapy – Jean-Luc Villeval, and Isabelle Plo, (Villejuif Cedex, France). Studies are in progress to better understand the differential response to IFN treatment in JAK2 versus CALR mutated disease models and patients. Initial results using progenitor cells from a cohort of MPN patients treated with IFNa for 33 – 50 months show that IFNa induces a more efficient molecular response in patients with JAK2 than CALR mutations. Also, using a preclinical model, the combination of IFN and arsenic was shown to sensitize the IFN-induced response and reduce the disease-initiating cell population.
Novel Agents for the Treatment of Malignancies– Leon Platanias, (Chicago IL). A number of proteins present in IFNα-inducible signaling complexes have been identified, including some found to be up-regulated in MPN patients compared to healthy individuals. Selected targets are now being studied in more detail to define their potential involvement in MPN pathophysiology. Once a final series of proteins of potential interest are selected, the plan is to perform studies to examine whether gene expression levels or mutations of these proteins correlate to IFNα response in patient samples.Using a vascular niche platform to develop interferon-based strategies to eradicate MPN stem cells and phenotypes. – Joseph Scandura, (New York, NY). A cell-based blood formation factory has been established to study the development of mature blood cells from stem cell precursors. Typical patterns of hematopoietic differentiation bias due to MPN driver mutations in patients +/- IFN treatment have been determined. As is often seen in patients, IFN treatment allows normal hematopoietic cells to more effectively compete against MPN cells in this model culture system. IFN does this by reducing the myeloid maturation bias conferred by MPN driver mutations.
This initiative is funded by MPN patients and supporters, a collaborative funding partnership with Cancer Research & Treatment Fund and MPN Alliance Australia, and by generous contributions from PharmaEssentia.
The Progression Project
Formerly known as the Progression Marker Project
The MPN Research Foundation’s interest in supporting efforts to better understand and develop strategies to halt disease progression dates back to 2016. At that time, a working group was assembled to study the field, identify the gaps, and determine the best role for the Foundation. For many months, our efforts were centered around the need for more patient samples readily available for researchers in the field, possibly supporting a biobanking effort and/or partnering with a major academic center. In the meantime, the field of MPN progression research continued to move forward with a significant number of researchers worldwide working on this topic and making great progress in a short amount of time. It was made public in 2018 that several other institutions had already begun collecting and sequencing MPN patient samples for use in research.
Based on the information gathered and presented to the board of directors in November 2018, the recommendation was made to hit the pause button on a biobanking effort and focus on two key pieces of information gathering: 1) better understand the financial commitment needed in the study of progression and 2) convene a meeting of experts in the progression field seeking their advice and proposals for collaborative solutions that address disease progression. Ultimately this information will be used to define a more targeted area(s) in need of our support and consistent with our financial capacity. The MPN Research Foundation will continue to fund progression-related research and will revisit the concept of a biobank after convening a meeting of experts to discuss progression in 2019.
ADVOCATING FOR PATIENTS
People who receive a rare MPN diagnosis may feel isolated and fearful of a shortened life, but many can lead a fulfilling life with substantial life expectancy if patients learn about their disease and participate actively in their care. In 2018, working in collaboration with a group of other advocates working in the MPN space, the MPN Research Foundation developed and distributed the MPN Patient Bill of Rights. This tool helps establish and promote awareness of core elements central to quality MPN patient care. We believe the Patient Bill of Rights is already proving beneficial to both long-time and newly-diagnosed patients. Click here to view and download the Patients' Bill of Rights infographic.
Patient-Focused Drug Development Meeting
For many years, the MPN Research Foundation has heard from researchers and patients that are frustrated by the drug approval process, especially in the United States. As it stands, there is only one drug approved for use in the treatment of MPNs in the United States, and that drug is not disease altering or curative. After many conversations with experts in the field and representatives at the Food and Drug Administration, the Foundation decided to take the lead in organizing a Patient-Focused Drug Development Meeting with the FDA. This meeting will give patients and those working to develop new treatments for MPN patients an opportunity to discuss what it’s like to live with an MPN, addressing the need for additional endpoints that may provide different targets for drug developers. We are working in partnership with other advocates in the space such as MPN Advocacy and Education, International, Leukemia & Lymphoma Society, MPN Cancer Connection, and UT-San Antonio’s Drs. Ruben Mesa and Robyn Scherber. The meeting will take place on September 15, 2019, in Hyattsville, MD.
Telling Patient Stories
An important part of advocating for patients is telling the patient story. While these stories have long been a presence on our website, 2018 marked a new commitment to encouraging patients to share their stories on our site and on social media. Creating awareness for MPNs has an important ripple effect on our work. Increased awareness may lead to earlier diagnosis, a better understanding of treatment options within the patient population and the medical community, and a better quality of life for those living with an MPN. Perhaps most importantly, telling patient stories strengthens the MPN community, allowing those affected by these cancers to find comfort, wisdom, and strength in others. A robust, supportive MPN community is crucial to finding new treatments and a cure, and we are grateful to the many patients and caretakers who took the time to share their stories with the world. We look forward to one day telling the story of a cure! Click the images below to read examples of patient stories from the MPNRF website.
Last year we reached an important goal: over $1 million raised from individual donors alone! We achieved this by doubling the number of donors to just over 2,600 individuals, proving that participation is the key to success! We want to thank each and every person who took the time to donate to our cause, and a special thank you to those who planned fundraising events, wrote letters and emails asking for donations, and asked their friends on social media to support our mission with a gift! Our work could not happen without the incredible generosity of our supporters, and we are grateful for the opportunity to further expand our research initiatives as our community of donors continues to grow. Medical research takes an extraordinary amount of resources, and no one person can find a cure on their own. Every gift, no matter the size, gives us an opportunity to fund the next big breakthrough.
Our corporate partners and support from other foundations and organizations brought our total to just over $2.18 million raised in 2018 to fund MPN research. This kind of support from companies working in the MPN space is important to advancing our cause, and we are proud that they deem our work worthy of such generous support.
Some of our donors have been giving to the MPN Research Foundation for ten years or more, and others have given more than $25,000 to the Foundation since our founding almost 20 years ago. We are proud to recognize these and our other annual donors in this year’s report. You can find a full list of our 2018 donors here.
The MPN Research Foundation is committed to responsibly investing resources on behalf of the MPN patient community while keeping administrative costs low. In the 2018 fiscal year, as part of a plan to spend down some of our reserves, the Foundation ended with a deficit of $387,000. These funds were used to support ad hoc research projects as well as an increase in our outreach and patient advocacy initiatives. If you are interested in seeing a more detailed account of our financials, click here to download a pdf of our FY18 Financials. Click here for our FY18 990.
WE ARE HERE TO HELP
This past year, we heard from patients struggling to find the right doctor, while others needed help when their insurance refused to cover their treatment. When speaking with us, some patients were even surprised to hear that MPNs are classified as cancer.
The MPN Research Foundation was created by patients for patients, and we are here to help those living with an MPN and their families find information, support, and hope for the future. Over the years, we have steadily grown, both in our ability to fund new research and in our ability to field questions from patients. We hope you reach out if you have questions, need some advice, or if you just need to talk! It is important that we keep patients connected to the work being done in research labs. We communicate with the MPN community through our bi-annual newsletter (spring and fall), through our monthly email digests, and through social media. If you want to stay up-to-date on the science, or if you'd like to feel more connected to the MPN community, we encourage you to sign up on our website and like our page on Facebook.
CARRYING ON THE LEGACY OF ROBERT ROSEN
By Molly Rosen Guy
When my Dad was diagnosed with blood cancer in 1997, he was an active nine-to-five business guy. Father of three, third generation Chicagoan, he had an MBA, a pilot’s license and a house on Lake Michigan. He had recently played basketball in the Senior Olympics. But he was constantly fatigued. His fingertips were tingling. We were walking downtown the summer after my sophomore year of college, and he told me: something is not right in my body. A few months later, during Thanksgiving break, he gathered the family together and said he’d been diagnosed with polycythemia vera, a gene mutation that affected his red blood cell production. I remember seeing my mom’s mascara smeared all over her pillowcase when I went into the bedroom the next morning to grab the cordless phone off the nightstand. She’d been crying all night.
My Dad’s diagnosis coincided with a life transition. He had recently sold his real estate business and was searching for a renewed purpose in life. “I’d always wanted to do something for the greater good,” he said years later, “and now there was a chance to do that and help myself and other patients in the process.” And so the MPN Research Foundation — a non-profit whose goal was to stimulate original research in pursuit of a cure for polycythemia vera and other related diseases collectively as myeloproliferative neoplasms (MPNs). — was born. Dad had no background in science, medical research, or grant programs. But he was hell-bent on learning. He built a team focused on connecting patients with researchers. His goal was to ensure that no patient would feel as hopeless as he did upon diagnoses. Twenty years, 13 million dollars and 60 funded research projects later, he did just that.
Here’s the thing: Much of MPN happens beneath the surface. Organs enlarge, joints swell, red blood cells thicken inside the bone marrow. Most people didn’t even know Dad was sick. He didn’t look sick. He didn’t act sick. But he was sick.
And in the summer of 2017, twenty years after his original diagnosis, his polycythemia vera converted to myelofibrosis, and then to leukemia, and he moved to New York to prepare for a stem cell transplant. Four months later, he died.
This progression – which is something patients fear most and researchers don’t understand – happened right before my eyes. It was terrifying. It was the worst and saddest thing that’s ever happened to my family and me. That’s why I’m writing to you today. To do what Dad cannot: to ask for your help. My Dad had access to the best doctors in the world, and still, he died before his time. Each year, hundreds of thousands of people await a similar fate. Our goal is to raise $500,000 for the Robert Rosen Memorial Fund to give those patients hope for the future and to ensure that his legacy will not be in vain.
My Dad’s story and the stories of thousands of other patients show us the road ahead. We need to make the only cure for MPNs, stem cell transplant, safer and more successful; we need to better understand disease progression and stop it in the first place; and we need to continue to put pressure on the medical community to better address patient needs and improve quality of life for people living with these chronic cancers. Medical research is expensive, and no one person can find a cure on their own. My dad knew this and built the MPN Research Foundation based on this fact. I used to tell him: make the mission of the foundation personal. Make it about you. Make yourself the face of this disease. But being front and center was not his style. He was too humble. Or maybe he was scared. Or maybe, in his case, it’s the same thing.
Your gift to the Robert Rosen Memorial Fund will keep the best minds in scientific and translational research fixed on the issues of MPNs. We still have a lot of work to do before a cure is found, but every dollar raised for the MPN Research Foundation gets us a little closer.