Patient Impact Council (PIC)

MPN Research Foundation’s Patient Impact Council supports our commitment to patient-centric MPN research. The Council is composed of patients and caregivers spanning a diverse range of MPN experiences, diagnoses, demographics, and geographic locations.

Each council member brings their lived experience in Myeloproliferative neoplasms (MPNs), interest in medical research, community engagement, and unique insights forward, helping MPN Research Foundation (MPNRF) advocate for the patient voice by:

  • Including patients’ voices, lived experiences, and perspectives in the decision-making process to inform all aspects of MPNRF to promote research advances and therapies with meaningful benefits to patients

  • Promoting meaningful partnerships, shared understandings, and ongoing communications among patients, families, caregivers, researchers, and industry

  • Collaboratively developing education and training among patients, families, caregivers, and researchers

  • Facilitating exposure to other perspectives, promoting personal growth, and increasing capacity to enhance MPN research.

Kyle Bonder​

Caregiver - unclassified MPN -
bone marrow transplant

New York, New York

  • My mother was diagnosed with a rare, unclassified MPN in 2013. Shortly after that, she had a stem cell transplant, which we think did something but did not cure her. Since then, it has been a roller coaster with different treatments, including a clinical trial that saw some exciting results at the time. While treatment is ongoing, we just celebrated her 10-year birthday in August!

    My mom is treated at Weill Cornell. Her oncologist is Dr. Gail Roboz, and her stem cell doctor is Dr. Koen van Besein, who has since moved to the Cleveland Medical Center. We have a longstanding and good relationship with both doctors and their staff. I have also worked with Delete Blood Cancer for years and have participated in adult caregiver support groups through Cancer Care.

    I only have a little experience in research and am interested in anything and everything. The clinical trial that my mother was on was predicated on so much research on her specific disease and her specific cells. The treatment was featured in Weill Cornell’s capital campaign for precision medicine. In short, I want to learn more!

    Considering I am a caregiver, I would love to try to help caregivers navigate the scary and confusing process of treatment, the hospital system, finding resources, whether they be financial or otherwise, etc. I also want to help give hope to people with rare MPNs by helping to support innovative research.

Bridget Broaden

Essential thrombocythemia

Belleville, Illinois

  • Before my diagnosis, I had been dealing with fatigue (1988). I began experiencing dry skin, muscle weakness, muscle aches, tenderness, and stiffness. When I returned from the Persian Gulf War, I continued to experience fatigue along with migraines, and a burning and throbbing feeling in my hands and the soles of my feet. When my term ended in my military career (1993), my primary care physician and rheumatologist kept me on an aspirin regimen. After continued blood work and an aspirin regimen throughout the years, I was diagnosed with essential thrombocythemia JAK2 (2015). I started out on anagrelide/aspirin regimen and changed to hydroxyurea/aspirin in 2017.

    My connections with the MPN community started with the MPN Research Foundation in 2015. I was told there was a shortage of anagrelide, and I would have to start taking hydroxyurea. I reached out to Michelle Woehrle and she verified that there was a change in manufacturers and in the meantime, my hematologist could just prescribe the brand name. For that, I’m forever and will always be Team MPN Research Foundation. Also, I connect online with various Facebook groups.

    I want to be a part of the resolution, make a meaningful connection, get informed as well as assist others by being an advocate and using my voice.

Jean Diesch

Polycythemia vera

Gibsonia, Pennsylvania

  • For several years, I suffered many debilitating symptoms, not knowing why. Having daily debilitating headaches for years, itchy skin, and many other now-known symptoms, I was diagnosed with Polycythemia Vera in 2009 by my PCP. He found abnormal blood work in a routine blood test. In 2013, I attended a Patient Symposium sponsored by the MPN Research Foundation. The Symposium was a wealth of information, and with the encouragement of the MPN Research Foundation, I began advocating for myself and others. Two doctors at that meeting encouraged me to see an MPN Specialist. That was the beginning of finally getting help and becoming a patient advocate.

    I formed the Pittsburgh MPN Support Group in 2013. My Research Doctor encouraged me to mentor newly diagnosed MPN patients for Cleveland Clinic 4thAngels and later Imerman’s Angels and Leukemia & Lymphoma Society. I have been a guest speaker for the MPN Research Foundation, Incyte, and Novartis and interviewed by Oncology Magazine and Patient Power. To help bring awareness of the importance of support groups, a professor, a Pittsburgh MPN Support Group member, asks me yearly to speak to his Medical Sociology Class.

    2018, I was honored as an “MPN Hero of the Year” by Cure Magazine. My experiences led me to coin a saying, “Living with a rare disease isn’t so rare when you have one!”

    I want to see us bring MPN knowledge to all hematologists, not just MPN specialists. Informing PCPs about MPN symptoms so patients get diagnosed sooner and more.

Tyler Parsons

Polycythemia vera

St. Louis, Missouri

  • I was diagnosed with Polycythemia Vera in 2021 after a series of blood clots over ten years prompted a JAK2 genetic test. I was 17 when I had my first deep vein thrombosis (DVT), and I had two more throughout college and grad school. The final incident, which prompted the MPN testing, was a portal vein clot in the liver and a clot in the spleen. After going on and coming off blood thinners such as coumadin, heparin, and aspirin, as well as receiving phlebotomies, when necessary, it was determined that more intervention was necessary. I am now on Eliquis (Apixaban), aspirin, and Besremi (ropeginterferon alfa-2b) and under the care of a great team at Siteman Cancer Center at Washington University in St. Louis.

    Interestingly, my diagnosis came as I was completing my PhD in Biomedicine with a focus in Cancer Biology. I am now a postdoctoral research fellow at Washington University School of Medicine in St. Louis, with a research focus on MPNs. The majority of my work utilizes MPN patient samples to perform my research, and I have had the opportunity to connect with MPN patients, MPN organizations (MPNRF, PV Reporter, MPN Cancer Connection, and others), and podcasts on which I was able to share my story as part of my ongoing efforts to have a tangible impact on the patient community.

    My research interests center on MPN transformation to secondary malignancies with the goal of earlier disease detection and enhanced patient surveillance. This includes seeking to isolate and chart the mutant clonal architecture that evolves during an MPN patient’s life and determining how different MPN subtypes provide environments for pre-/leukemic clones to grow

    Ultimately, research in a lab is done to improve patient outcomes and our understanding of disease biology. As an MPN patient myself, I find that it is crucial to remain grounded in the “why” of biomedical research so as not to get lost in the tedium of research. In addition, I think it is an important reminder that MPNs are not isolated from middle-aged and elderly adults. I believe that my case as a younger patient actively being treated with an MPN in conjunction with my personal career interests brings a unique perspective to the council that I hope will be beneficial for the MPN community.

Robert Greenbaum

Essential thrombocythemia - acute myeloid leukemia - bone marrow transplant

Holly Springs, North Carolina

  • I was initially diagnosed in April 2012 with chronic myeloproliferative disorder, specifically “Essential Thrombocytosis (ET) plus” by Dr. David M. Heyer (retired hematologist/oncologist with Inova Medical Group in Arlington and Reston, VA). The ‘plus’ was due to elevated WBC in addition to the high platelet levels that I had associated with ET. I was later tested and diagnosed positively with a calreticulin (CALR) mutation. From 2012 through 2020, I was fairly status quo, had regular labs, and saw specialists at John Hopkins Cancer Center in Baltimore.

    I moved to NC in June 2020 and finally got a PCP in November 2020, who then referred me to Dr. Elizabeth Campbell with Waverly Hematology Oncology in Cary, NC in January 2021. She felt my condition was progressing to something worse and referred me to Dr. Harry Erba at Duke Cancer Center. In April 2021, Dr. Erba diagnosed me with Acute Myeloid Leukemia (AML), and the prognosis was about three months to live if I could not find a donor and get a bone marrow transplant (BMT).

    Dr. Erba also connected me with Dr. Mitchell E. Horwitz, at Duke, to start the BMT process. I started chemotherapy in June 2021 and received my BMT from an anonymous donor via ‘Be The Match’ on 8/24/21. I just had my 2-year checkup and shots at Duke ABMT Clinic on 8/29/23, and I am doing well.

    After going through AML and a BMT, I have tried to share my story and promote Be The Match and the MPNRF through my own social media and other efforts. I even did a Facebook charitable campaign and raised over $2,700 for Be The Match. Throughout my medical process and journey over the past 11 years, I signed up for research studies and joined a patient focus group to share my story and help others.

    I am interested in research on the impact of diet and exercise on the health of patients with MPN. In addition, I am interested in research on why mutations such as CALR and JAK-2 occur, plus the development of treatments/medicine designed to slow or reverse these mutations.

    I wanted to join the MPN RF Patient Impact Council to help others affected by MPNs, help bring awareness to MPNs and blood cancers, and provide a patient’s perspective on potential education, research, and other efforts. By joining the Council, I hope to give back and help others as I have been helped and touched by many others during my journey and battle with ET and AML.

Ben Hohenbrink

Myelofibrosis

Bluffton, Ohio

  • In 2012, I was diagnosed at age 33 with Essential Thrombocythemia after routine blood work came back with platelet counts near 1.5 million, and subsequent bone marrow biopsy tests confirmed the diagnosis. This was managed well with hydroxyurea for nearly ten years before blood counts started to change. After another bone marrow biopsy in May 2023, I learned the ET had progressed to Myelofibrosis. I am now working with my doctors to make changes to treatments to manage Myelofibrosis and associated symptoms better, as well as meeting with stem cell transplant doctors to prepare for this procedure.

    Being from a rural area, only a few individuals deal with MPNs in my community. Most of my connections to the larger MPN community are through online and other electronic sources that I have sought out through individual research. I have recently made connections through these groups that connected me with other doctors taking a much more proactive treatment approach versus one that felt more reactive before.

    Research areas of interest are around treatments that can impact the underlying condition, that is, not broad-based treatment that affects the patient’s quality of life through inducing severe anemia or other negative side effects. Additionally, I’m interested in anything that can advance the overall knowledge and understanding of MPNs to develop better treatments based on that information. When I was first diagnosed with ET, my specific gene mutation had yet to be linked to MPNs, and that knowledge now provides great insight into treatments and overall risk.

    I want to help drive knowledge and awareness for patients impacted by MPNs and those in the medical field who are developing or administering treatments to patients. I want to share my experiences with researchers and doctors to help develop new, novel therapies that can help reduce the physical impacts on patients and help them understand things that patients may benefit from knowing through their treatments. I also want to provide a voice from a patient’s perspective on how we, as a community, can improve awareness and access to information for patients and their caregivers to learn about their diagnosis, treatment options, things to expect, and what to be aware of through the course of treatment.

TJ Houppert

Essential thrombocythemia

Fairport, New York

  • I was diagnosed in August 2016 with Essential Thrombocythemia (ET). While I never imagined chronic leukemia would be a part of my life story, I have learned to embrace life with leukemia and not let ET own it. Myeloproliferative Neoplasms became extremely personal when my dad was diagnosed with Myelofibrosis in 2022.

    Since 2020, I’ve volunteered with the Leukemia and Lymphoma Society to connect with others diagnosed with ET. It is incredibly helpful to connect with someone who understands what it’s like to have this disease. Many of those I’ve connected to have stayed in touch over the years. I am interested in understanding how MPNs evolve from ET or PV to MF. In addition, how can treatments evolve to improve long-term symptoms and quality of life.

    I am committed to raising awareness in the medical community about Myeloproliferative Neoplasms in hopes of earlier detection and increasing peace of mind for those newly diagnosed.

Ned Weinshenker

Myelofibrosis

Providence, Utah

  • Diagnosed with PMF in Nov 2018, I entered the MANIFEST clinical trial (ruxolitinib+pelabresib) in March 2019. After initially needing transfusions about every four weeks, I have now been transfusion independent for 2.5 years and my JAK2 mutation burden has significantly fallen from ~50-60% to 14%.

    I have been on a previous MPNRF panel of patients. I also am on a PatientPower committee, have helped start a patient support group for MF patients at the Huntsman Cancer Institute, interact with patients that are referred to me by MPNRF. I participated in the MPNRF FDA mtg in 2019, and am currently on a pharma company patient council.

    I am interested in any activities related to MPN diseases and follow the literature. I am particularly interested in exploring the genetic factors that control which drugs work best in individual patients. Given that in most clinical trials, a minority of patients respond positively, we need to know why to be able to suggest the best therapeutic options.

    I have been passionate about furthering my knowledge of these diseases, and any way I can help other patients and myself to get better treatment is my goal. As mentioned above, furthering the ability to provide truly personalized medicine for this heterogeneous malady is crucial.

Andrea Spica

Essential thrombocythemia - myelofibrosis - bone marrow transplant

Dallas, Texas

  • My MPN journey began in 1998, and I was diagnosed with Essential Thrombocythemia. Ten years later, in 2008, after converting to Myelofibrosis, I started participating in Clinical trials at MD Anderson in an attempt to alleviate my symptoms while helping doctors find help for folks diagnosed with MPNs. Then, in 2018, my condition deteriorated, with a stem cell transplant being my next and only option. I am now almost six years post-transplant, healthy, and enjoying the extra time a transplant has given me.

    Throughout my journey, the MPN community has been a wonderful support. In an attempt to give back and share, I accepted the request to lead the North Texas Patient Support Group, which I gladly did for several years.

    At the request of MD Anderson, I was a panelist at an MPN conference where I shared my transplant survivor story and answered questions.

    Additionally, I have attended conferences sponsored by the MPN Education Foundation, was a judge for the 2020 MPN Heroes Recognition Program and their Support Leader Panel.

    As an MPN and Transplant survivor, I have spoken to and gladly shared my experience and knowledge with anyone, patient and caregiver, who has questions and/or would like to talk to someone with experience as a patient and transplant survivor.

    Since the MPN community has been my support for many years, I am keenly interested in helping, to the best of my abilities, the MPNRF in their efforts to fund research to uncover the role of inflammation, inflammatory mediators, and bone marrow environment, molecular studies and JAK2 inhibitions drugs, to name a few.

    I am honored to have been chosen to be a member of the Patient Impact Council. I firmly believe in patient advocacy from external sources such as MPNRF and self-education because being an advocate for your health is important in navigating MPN diseases successfully.

    Through my knowledge and experience, I hope to contribute constructive insight into helping others become knowledgeable about their disease through various avenues such as medical publications/article research, communication with other ET/MF patients, transplant survivors, doctors, and hospital teams, post-transplant care, and understanding of same.

    I believe that my participation in Clinical Trials prolonged my life until I had a life-saving transplant, so it is important to me to work with an organization dedicated to assisting researchers in these efforts.

MJ Tooey

Essential thrombocythemia

Ellicott City, Maryland

  • I was diagnosed in 2005 with Essential Thrombocythemia (ET), JAK2+, for the first nine years until I reached the dreaded 1 million platelets and age 60, I was simply on an aspirin regimen. Moving to Hydroxyurea seemed fine, with only minor side effects until, after about six years, I developed an ulcer on my ankle that took about six months to resolve. My next regimen, Pegasys, caused autoimmune hepatitis, negatively impacting my liver and red cell counts. I have been on Jakafi for over a year and seem to tolerate it quite well.

    The number of support groups through MPNRF, on Facebook, and through other organizations focused on MPNs has certainly grown over the past few years. I belong to several blogs and Facebook groups. For many years, my husband and I had donated to MPNRF and on Amazon Smile; when it existed, MPNRF was my donation target. Having been an academic health sciences librarian for over 40 years, I support the MPN community with accurate information and combat misinformation whenever I see it while acknowledging that an MPN diagnosis is scary for all of us.

    My research interests are varied. I would like to see more research on the mental impacts of having a chronic, invisible, rare group of diseases. Chronic disease is stressful. That stress is compounded by the lack of knowledge within and outside the community regarding how to deal with a chronic blood cancer. Related to this is research into finding effective strategies for dealing with symptoms and the effects of the diseases. Finally, the most exciting avenue of research is in finding a cure. Groundbreaking research is taking place at the genomic level, with vaccines and therapeutic advances in other cancers that may apply to MPNs.

    This council brings together many of my interests – access to quality health information, research, and effective communication strategies. With my recent retirement, I felt that now was the time for me to step up and do more than just read newsletters and blogs and make financial contributions. Realizing the variety of experiences and access to care in the MPN community, my professional experience and familiarity with grants and contracts allow me to truly support the MPN community.

Dana Turner

Polycythemia vera

Chicago, Illinois

  • Since I was a young child, I’ve had high platelets. Unfortunately, my pediatrician never investigated the cause of my elevated counts, even though I experienced strange symptoms such as migraine with aura and was also diagnosed with Raynaud’s Disease before I was a teenager. It wasn’t until 2019 that I was officially diagnosed with an MPN, Essential Thrombocythemia. During my diagnosis journey, my diagnosis changed from ET to Polycythemia Vera in 2020 after my bone marrow biopsy determined I was positive for the JAK2 mutation, and my hematocrit and hemoglobin began to rise. Therapeutic phlebotomy treatments effectively stabilized my blood counts (except my platelets, which continued to rise), but I felt miserable and severely iron-depleted. In January 2022, I started Besremi, which has been life-changing in my MPN journey. My platelets, hematocrit, and hemoglobin have been within normal limits for a year, and I am truly grateful for the gift of a healthy future.

    Since my diagnosis, I knew I needed to seek out a community to find others like me. However, most of the information I found was geared toward older adults rather than younger patients like me. Thankfully, I found MPN Voice, located in the UK, which connected me with an incredible group of young patients from all over the world who share my unique experiences of being diagnosed with an MPN at a young age. I’ve been active in their young patient community, added my story to their young patient blog last September, and am also a patient ambassador for Besremi, where I share my ideas and experiences while on this life-changing medication.

    As a younger patient, I am interested in MPN research related to long-term prognosis for individuals diagnosed with an MPN at a young age and long-range treatment outcomes for younger patients on interferon medications.

    I joined the MPN Research Foundation Patient Impact Council to help spread awareness that MPNs do not affect only older populations but younger individuals as well. I believe that this will help patients access more timely and accurate diagnosis and treatment to avoid disease progression. I want to encourage patient advocacy to support our rights in finding the right treatment options based not only on current symptoms or disease burden but also on long-term treatment goals. I also hope to connect with other patients with similar ideas and goals and contribute to current MPN research initiatives.

Joan Yatsko

Myelofibrosis - bone marrow transplant

Linfield, Pennsylvania

  • In December 2019, I was diagnosed with primary myelofibrosis (PMF). My diagnosis was preceded by several years of tracking low white blood counts (WBC). After careful follow-up, identification of a JAK2 mutation, increase in symptoms, anemia treatments, and an increase in blasts, I was headed to stem cell transplant (SCT). I received the stem cells from an unrelated donor on 2/22/23. I am doing well and on the road to recovery.

    Patient Advocacy groups are one of the cornerstones of most disease entities, and I sought out most of them, including biopharmaceutical companies developing treatment options. I gained knowledge about MPNs from Patient Power, MPN Advocacy, and Education, and I learned even more about treatments from pharma websites and doing Pub Med searches. My connection to MPNRF helped me to learn more about current treatments and clinical trials and led me to be matched to a trial for my SCT.

    My research interests are divided into clinical trials and retro/prospective analysis. In the clinical trial category, I am interested in trials for 1) patients who are candidates for SCT and 2) non-candidates. For those who qualify for SCT, I would like to see trials that focus on the potential to decrease the serious side effects of transplant and improve successful outcomes (e.g., less failures and the ability to get more patients to transplant). For non-candidates (including those not yet ready for transplant), my interests include multi-targeted combination therapies. These therapies should focus on impacting the underlying disease, course of disease progression, and include improvements in quality of life, survival benefits plus have limited effects on healthy blood counts (e.g., anemia). My other interest is retro/ prospective analysis — based on the rarity/variety of MPNs and the difficulty of getting patients into clinical trials. It could be beneficial to utilize anecdotes retrospectively or prospectively to help uncover data that would not be achievable with a trial (e.g., difficulties enrolling, limited patient numbers, long time frame to complete).

    My rationale for wanting to join the MPNRF Patient Council is three-fold. First, my connection to this rare disease category – MPN (my personal diagnosis and my father’s diagnosis of myelodysplastic syndrome). Second, after spending most of my career in the pharmaceutical industry with experience in drug development strategy and clinical trials, I understand the necessity and difficulty of getting patients into trials and advocate for improving recruitment. Third, this is a wonderful opportunity for me personally; I can utilize my experiences to give back to the MPN patient community and the Research Foundation.

John Grudnowski

Essential Thrombocythemia

Wilmington, North Carolina 

  • In May 2021, while working out, I suddenly felt so weak that I nearly fell over. Within 30 minutes, I could barely stand. Two hours later, I was in a clinic in Costa Rica being told—in Spanish—that I was having a heart attack. Thankfully, I survived. Doctors later found a blood clot in my heart that resolved after 90 days of treatment. Over the next two and a half years, I worked with cardiology teams at the Mayo Clinic and HCMC in Minneapolis. Their conclusion was puzzling: by all traditional measures, I should not have had a heart attack. My numbers were excellent and my calcium score was zero. Stress was considered a possible factor, but no clear cause was identified. 

    During my recovery, I reviewed years of blood tests dating back to 2011 and noticed my platelet counts had steadily increased, eventually reaching the high 500s. Before my annual physical in January 2024, I asked my primary care physician what this might mean. That question led to additional testing and ultimately a bone marrow biopsy confirming my diagnosis of Essential Thrombocythemia (ET). 

    Like many patients, hearing the word cancer was difficult. My mind immediately went to worst-case scenarios, such as missing my daughters’ graduations or not growing old with my wife. Over time, however, I realized much of that fear came from a lack of understanding about myeloproliferative neoplasms (MPNs). Now, more than two years after my diagnosis, I often view my heart attack and ET diagnosis as unexpected turning points that helped me refocus on what matters most: my wife, our two daughters, living a healthy fulfilling life. 

    As a member of the PIC, I hope to help raise awareness of MPNs both within the patient community and beyond. In hindsight, I likely had ET prior to 2012, and for nine consecutive years my annual physicals showed platelet counts above the normal range. I simply didn’t ask enough questions and I soon learned that cardiologists often don’t connect with hematology. My numbers simply weren’t “high enough.”   

    Can we help doctors and future patients recognize these MPNs earlier? 

    I also hope my experience allows me to support fellow patients—through conversation, shared stories, encouragement, and by supporting research, trials, and testing that can move our collective knowledge forward. 

Caleb Sargent

Essential Thrombocythemia

Columbus, Ohio

  • At age 23 I reported fatigue at a routine appointment and completed routine labwork, which showed a platelet count of 1850 (the normal range is 200-400). From there, I completed dozens of blood tests to rule out more common conditions – iron deficiency, infection, etc. After many months I was diagnosed with Essential Thrombocythemia (ET) with a CALR mutation. I was seeing a general oncologist at this time, who suggested treatment with hydroxyurea and weekly bloodwork to monitor blood counts. I was told there was no better treatment available and no way to improve my lifespan through medication. 

    The idea of having cancer terrified me, and I had not seriously considered at that young age that I could have a life-altering condition. I read countless studies on mortality rates and average lifespans, which were difficult to parse through due to ET being rare in young patients. From this research, I found that it was necessary to seek out an MPN specialist, Dr. Aaron Gerds. Receiving care from Dr. Gerds has been revolutionary in my treatment, and I am now in a CALR Monoclonal Antibody trial treatment. I reflect often on the differences in my life as a result of this decision. This treatment has no side effects for me, seems to improve lifespan and disease progression, and is less taxing on my body.   

    My background in social work in addition to my personal experience has taught me that patient education is vital in receiving adequate care. If even general oncologists are unable to keep up with the best treatments for MPNs, how can we expect the average patient to be informed? I’m fortunate to have a background in medical social work and an uncle who is a healthcare worker. As such, I had the knowledge to seek out better care. I want to ensure that patients in my situation do not fall through the cracks of the healthcare system. 

    I’m also interested in the emotional burden of MPN diagnosis and treatment. Most younger patients have not seriously considered how to process cancer and death. One of my areas of expertise in my work is Existential Psychotherapy, and the principles of that treatment are very valuable in processing what it means to have a progressive cancer.   

    I’m excited to bring my skillset to the council and improve the lives of MPN patients, as well as to connect with other patients like myself. The MPN community is small, and I’ve never met another patient with an MPN in-person. As such, I’m excited to connect with others who have similar experiences. 

Jane Burns

MPN-Unclassifiable

Alberta, Canada 

  • I was diagnosed with MPN-U (Unclassifiable) Triple Negative in 2019 following a bone marrow biopsy (BMB), which was re-confirmed in 2025. For years, I had experienced fatigue, pain, skin itch, recurring infections and occasionally unexplained bleeding. My main symptom, fatigue, was blamed on the long working hours of a busy professional and my primary care physician prescribed “more vacation time”. I had to learn to trust my own intuition, listen to my body and advocate for myself. The path to diagnosis for a rare condition can be long. By improving awareness of MPN’s with healthcare professionals we can help prevent delay of diagnosis and treatment.  

    I connected to a local MPN support group through the First Connection program of the Leukemia and Lymphoma Society of Canada (LLSC) three years after diagnosis, just as pandemic restrictions were easing. Meeting other MPN patients was very enlightening and I learned how different our patient journeys are. No two MPN’s are alike. I also gained appreciation for the support that care partners give their loved ones, often at their own sacrifice. I became an MPN support group leader in Southern Alberta (Calgary), Canada, where I organized presentations from MPN specialists and Nurse Practitioners from the Arthur J.E. Child Comprehensive Cancer Care Centre, Hematology and BMT Clinic. I soon became a patient advocate and got involved with the Canadian MPN Network, a national organization dedicated to advocacy, patient education and support. I started Young MPN Patients Canada, a psycho-social support group for young adults aged 18-39. I also became a First Connector for newly diagnosed MPN patients and an Ambassador with LLSC. By working collaboratively with numerous organizations, we can help bring awareness and drive change for MPN patients. 

    You can’t be a patient advocate without becoming a research advocate. I am interested in research that improves the lives of MPN patients in key areas: (1) rare sub-types with yet-to-be discovered mutations, (2) innovations in symptom profiles and longitudinal studies for young MPN patients 18-39, (3) improvements in the treatment of advanced MF and post-transplant recovery, complications and relapse, and (4) the role trauma plays in both contributing to cancer and in patients delaying, avoiding or not accessing treatment, as well as medical trauma that may occur during the MPN journey. The loss of friends to MPN inspires me to seek any and every opportunity to get involved.