When a patient is diagnosed with myelofibrosis, polycythemia vera, or essential thrombocythemia, it can be an overwhelming and distressing message. Before the advent of the internet it was often difficult to impossible for patients to connect with other individuals who shared their questions and concerns. Today that could not be further from the truth; there are patient-led groups and patient-sponsored resources to suit the needs and style of every patient. As these groups grow and begin to work together, their collective impact can truly change the course of these diseases.
The MPN Research Foundation is committed to providing information about and links to all MPN patient groups serving our patient population, and to working together with them for the benefit of all patients. We maintain lists of MPN patient groups on our website and are proud to be actively working with many of these groups as partners on specific projects.
The need to reach even more patients if we are going to be able to speak with one clear and forceful voice is critical. Therefore we are pleased to announce the establishment of a new group which brings the power of other established blood cancer and cancer organizations to our MPN family.
The MPN Coalition
In 2012, a group of non-profit advocacy groups were convened to pool resources and ideas for supporting MPN patients. This group, which has been named the MPN Coalition, is currently chaired by Ann Brazeau of the MPNRF. Member foundations and their representatives include:
• The Leukemia and Lymphoma Society (Clare Karten, Senior Director, Mission Education)
• CancerCare, Inc. (Rosalie Canosa, Program Division Director)
• Cancer Support Community (Sara Goldberger, Senior Director of Programs)
• MPN Education Foundation (Antje Hjerpe, Executive Vice President and Bob Niblack, Founder)
• National Organization for Rare Disorders (NORD) (Mary Cobb, Senior VP Membership and Organizational Strategy and Mary Dunkle, VP of Communications)
The MPN Coalition was formed to provide a forum for discussion of and action on needs and challenges facing those living with an MPN. The goal is to create greater awareness of MPNs and to enhance education and access to care. The Coalition believes that there is power in numbers and that each organization can reach more patients, caregivers, physicians and communities than one organization whose reach is limited.
The Coalition’s vision is to:
• Provide access to appropriate treatments for all MPN patients
• Grow awareness in all disease groups and physician group
• Create and engage patients and physicians in comprehensive educational programs and offer support for both
• Make sure MPN patients and families receive state-of-the-art care now and hope for better options in the future.
By combining resources and efforts, the MPN Coalition has the potential to not only reach more patients and physicians who see MPN patients, but it will engage communities that may otherwise never have access to the correct information about their blood cancer or know about the treatment options now available to them.
As a first initiative, the Coalition has decided to focus this Fall on myelofibrosis, the most deadly of the MPNs. During September, National Blood Cancer Awareness Month, the MPNRF will host its first Midwest Patient Symposium in Chicago on September 20, and the Coalition has agreed to declare that day MF Awareness Day. Each of the members of the Coalition are planning activities and projects around this month and this day, in the hope that each year this focus on MF will grow in scope and impact.
We at the MPN Research Foundation are proud to currently be the leader of such a dedicated group of people and organizations who understand the value in research, advocacy, access, education and quality care for all MPN patients.