PATIENT ADVOCATES TAKE AIM AT PROGRESSION IN MYELOPROLIFERATIVE NEOPLASMS
Patient Advocates Take Aim at Progression in Myeloproliferative Neoplasms
Following up on a promise to invest in research that would lead to better understanding and prevention of progression from PV/ET to MF, the MPN Research Foundation has made its first strategic investment in this area with a one-year grant to Dr. Ann Mullally at Dana-Farber Cancer Institute.
The project is backed by the Robert B. Rosen Memorial Fund. Rosen was a founding member of the MPN Research Foundation who passed away in 2018 from complications of MPN that had progressed to AML. His daughter, Molly Rosen Guy, is a board member of the MPN Research Foundation, who with her siblings Becca and Zack and their mother Ellen are continuing to support research for MPNs.
Funding for this project also comes from the Susan Ann Protter Research Fund. Susan was an MPN patient who lived in New York City and was active in organizing a patient support group after she retired from a career in publishing.
MPNRF Executive Director Michelle Woehrle and Director of Scientific Strategy Rick Winneker, Ph.D., visited Dana Farber to learn more about the Center for Prevention of Progression of Blood Cancers and were inspired by the possibilities of utilizing the existing infrastructure at Dana-Farber to build on the knowledge of MPNs. Dr. Mullally’s work with CPOP will look at specific early-stage blood cancers and follow them over time. As people with a diagnosis of an MPN often live for decades beyond their initial diagnosis, MPNRF was eager to assist Dr. Mullally in her next steps in studying the disease.
Dr. Ann Mullally and her colleagues have already analyzed approximately 100 commonly mutated genes in myeloid blood cancers in over 1,000 PV, ET and MF patients seen at Dana-Farber. The next step is to begin to collect and enter their clinical data and patient information to build an integrated clinical-genomic MPN database, from which future discoveries about the origin and drivers of MPN progression will be determined.
“I am thrilled to receive this support from MPNRF. It represents an important commitment to understanding the role of genomics in promoting MPN progression and most importantly to use this information to develop early intervention strategies to prevent progression in patients with MPN. Dana-Farber has been at the leading edge of the integration of genomic information into clinical decision making in hematological malignancies. Through CPOP, our goal is to use genomic information to help inform our assessment of patients with MPN at the earliest stage of their disease.”
“This represents an important move for MPNRF and for investment in science in a way that will hopefully translate to better therapies or a cure, and simply more clarity, for all living with PV, ET, and MF,” says MPNRF’s Executive Director Michelle Woehrle. “Our goal is to continue to fill gaps that are preventing the acceleration of discovery that can help patients. Better outcomes for patients is our guiding light.”
In 2016 MPNRF set progression to MF as a major strategic area. In 2017, a patient registry – myMPN – was started to allow people with an MPN to self-report information about their disease and track this data longitudinally and the Foundation has begun to build a portfolio of progression-related projects that seek to answer questions about who is progressing from ET/PV to MF and why.
About MPN Research Foundation (MPNRF)
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, and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN). MPNRF is approaching it’s 20th anniversary of funding research, connecting patients to the latest discoveries, sharing educational resources and building hope.
For more about their work visit www.mpnrf.org