Myeloproliferative neoplasms (MPN) patient advocacy organizations are working together across borders to ensure that people living with an MPN (polycythemia vera, essential thrombocythemia and myelofibrosis) will have their treatment needs met by partnering with one another. These organizations are driven by the need to ensure a better understanding about the origins of MPN in hopes of finding better therapies and a cure.
MPNRF has in the past worked globally, from funding grants outside the U.S. to partnering with MPN Australia Alliance (MPNAA) on the MPN Interferon Initiative and participating in the MPN Advocates Network, a global movement to bring all MPN patient advocates together. But in 2019, with two distinct partnerships emerging, there is cause for more hope for people with MPN.
According to Michelle Woehrle of the MPN Research Foundation, “These collaborations between MPNRF and Ruby Red Foundation, as well as Canadian MPN Research Foundation, indicate that the MPN advocacy community is getting more organized and able to fight for what the people living with polycythemia vera, essential thrombocythemia and myelofibrosis need.”
The Canadian MPN Research Foundation was organized in 2019 in order to fund and promote research into the MPNs within Canada. The Canadian MPN Research Foundation’s Executive Director, Cheryl Petruk, was previously on the Board of Directors for U.S. based MPN Research Foundation. Her husband, Eugene Petruk, lived with myelofibrosis and was transfusion-dependent before he died in the spring of 2019. Cheryl was his caregiver and was inspired by her experience to start the Canadian MPN Network, which focused on education and outreach.
The first grant co-sponsored by the Canadian MPN Research Foundation and MPN Research Foundation is Vikas Gupta’s study of stem cell transplant outcomes, part of the 2019 MPN Challenge grant program. This multi-center project spearheaded by Dr. Gupta at Princess Margaret Hospital speaks to the urgent need for institutions to share information and participate jointly in research projects that will further our knowledge and benefit the community.
According to Merrill Pierce, the Canadian MPN Research Foundation Board chair, “We are thrilled to be collaborating with the US MPNRF as our relationship and shared values will only strengthen our position and solidify our equity within the Canadian medical/patient landscape”
The partnerships are not for the northern hemisphere alone.
Ruby Red Foundation is based in Sydney, Australia. The organization was formed in 2016 by Sophie Gibson, the mother of an infant girl with essential thrombocythemia. Through her own search for disease information, Sophie saw the need for an Australian MPN-focused foundation to increase awareness, supporting people with MPNs and prioritize research. In 2018, Ruby Red Foundation launched its research grant program funding projects which focus on disease progression, which is a topic of great concern to people with MPNs.
Sophie Gipson shared: “This fall we are thrilled to be collaborating and co-funding a project with MPN Research Foundation, who have been my inspiration.”
Shared concern about progression.
In 2018 Belinda Guo, Gunn Family National Career Development Fellow and Lecturer of the University of Western Australia, received a grant from the Ruby Red Foundation for her novel research investigating the potential role for platelets as markers of fibrotic progression, which may lead to the development of a blood test to detect underlying bone marrow fibrosis. Together, MPNRF and Ruby Red Foundation are taking this work further with a jointly-funded project entitled “Platelets as a novel marker for progression in myeloproliferative neoplasms.” This is a one-year project.
Funding for Dr. Guo’s project also comes in part from the Susan Ann Protter Research Fund. Susan was a supporter of the MPN Research Foundation. 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.
Says Lisa Manion, Director, “Ruby Red Foundation is proud to be collaborating with the MPN Research Foundation in continuing our support of the research undertaken by Dr Belinda Guo, PhD from the University of Western Australia. The findings from the initial Ruby Red Foundation-funded research undertaken by Dr. Guo showed promising results for early indicators of the progression of MPNs, hence we have decided to continue backing the program. This would not have been possible without the generous financial support from our members, The Commonwealth Bank of Australia Group Property and Security team and the public.”
More information about these projects and the research currently being funded by MPNRF, as well as patient education materials and information on clinical trials can be found at www.mpnrf.org.
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
To learn more about Bob Rosen’s legacy in the MPN Community and the Robert B. Rosen Memorial Fund click here or visit http://www.mpnresearchfoundation.org/Robert-Rosen-Memorial-Fund
About Ruby Red Foundation
Ruby Red Foundation is an Australian charity dedicated to improving the lives of people with Myeloproliferative Neoplasms (MPNs) and finding a cure. For more about their work visit https://rubyred.org.au/
About Canadian MPN Research Foundation
The Canadian MPN Research Foundation was established in 2018 to stimulate and fund new and existing research initiatives and projects for Myeloproliferative Neoplasm Blood Cancers in Canada.
Working closely with MPN Canada, The Canadian MPN Network and other stakeholder organizations, the Canadian MPN Research Foundation will strive to encourage the research and scientific community involved in MPN Blood Cancer research to look for new treatment options and to encourage research in Canada for a potential cure of MPN Blood Cancers. For more about their work visit https://cmpnrf.ca/