ROBERT ROSEN MEMORIAL FUND
Robert Rosen, founder of the MPN Research Foundation, had the best physicians in the world and still, he died before his time. We must do better for others diagnosed with MPNs. Our goal is to raise $500,000 for the Robert Rosen Memorial Fund, established at the MPN Research Foundation by members of the Rosen Family. These funds will directly support researchers and 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. Your gift to the Robert Rosen Memorial Fund will honor Bob’s legacy and will give researchers what they need to find the cure Bob was looking for. Please make a donation to the Robert Rosen Memorial Fund today!
Written by Molly Rosen Guy, Robert Rosen’s daughter
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 me and my family. 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.
WHAT YOUR GIFT WILL SUPPORT
Translational Science Grants
Bob was an impatient patient. He wanted answers, and he wanted them yesterday. In the spirit of needing immediate action with immediate benefit for patients, part of this Memorial fund will go towards the projects that will quickly move basic science research from the bench to the bedside for patients living today.
A perfect example is grant funding that will come out of our Adoptive T Cell symposium taking place at ASCO. We will hear from the leading MPN researchers focused on immunotherapy options who will discuss their work, identify roadblocks to success in MPN patients and inform our next steps with investments in this area. In future years as science and technology evolve, so will the specific focus of this grant area.
Project Goal: Provide funding for small clinical trials investigating drugs or therapies that show potential for patients with Myelofibrosis (MF).
MPN Stem Cell Timing Taskforce
Thousands of patients spend countless hours wondering if they should pursue a stem cell transplant, the only cure for MPNs. There are many questions surrounding a SCT. What patients are ideal candidates? When is the timing right? Are there ways to know who will have a successful SCT and who will not? Bob certainly wished he had the answers to these questions long before he was presented with an SCT as his last option. As this is the only known cure for MPNs, we owe it to patients to pursue this area of research further.
Project Goal: Invest in research that leads to safer, more effective stem cell transplants or better outcomes for MPN patients who undergo transplant.
Progression Marker Project
One of the last projects Bob Rosen helped launch at the MPN Research Foundation was the Progression Marker Project. This has the potential to have a meaningful, long-term impact on what we know about Polycythemia Vera (PV), Essential Thrombocythemia (ET), and their transformation to Myelofibrosis (MF).
Project Goal: Convene thought leaders working on the issue of progression to identify gaps in biosample collections needed for this type of research. This group will identify possible areas of collaboration and catalogue known markers of progression in order to track what work is being done to better understand those markers. We will provide financial assistance to enhance existing collections, incentivize the harmonization of data among investigators, and follow up on translating the discovery of markers.
MAXIMIZE YOUR IMPACT WITH A MULTI-YEAR PLEDGE
The Robert Rosen Memorial Fund has a goal of raising $500,000 over the next 5 years. With that in mind, the MPN Research Foundation will for the first time offer donors the opportunity to pay their gift commitment in installments. By offering this option, we hope people will dig deep and maximize their gift.
For example, instead of making a one-time $500 gift, make a pledge for $2,500 and pay your commitment in 5 annual installments! The MPN Research Foundation will immediately give you credit for the full amount of your pledge in all donor listings and will send you payment reminders according to the payment schedule you establish. Alternatively, you can set up a monthly or annual automatic payment through our website to fulfill your pledge.
Thank you for considering a multi-year pledge!
THE CAMPAIGN LAUNCH
On Thursday, March 14, 2019, friends, family, and former colleagues gathered to remember Robert Rosen, Founder of the MPN Research Foundation. Hosted at The Standard Club in Chicago, this luncheon featured special guest speaker Jason Rosenthal, attorney, real estate developer, and subject of the New York Times viral sensation, “You May Want to Marry My Husband.” This event highlighted the many contributions Bob made to the MPN space, and served as the formal launch of the Robert Rosen Memorial Fund.
DONATE TO THE ROBERT ROSEN MEMORIAL FUND
Our goal is to raise $500,000 for the Robert Rosen Memorial Fund. Your gift will honor our founder’s legacy and will give researchers what they need to find the cure Bob was looking for. Click here to pledge your support today.