September 1, 2014
I know that it seems like there’s a month or day for everything, from Hamburger Day to Dental Hygienist Appreciation Week, but there are really good reasons to have a month for Blood Cancer Awareness, particularly if you have Polycythemia Vera, Essential Thrombocythemia or Myelofibrosis.
There are many people who don’t recognize PV, ET, and MF as blood cancers. The World Health Organization does. It clarified that point in 2010 when it changed the name from disorder to neoplasms to leave no room for misunderstanding. Another reason is that it is a small population. There are approximately 300,000 patients in the U.S. with an MPN. It is easier to lose sight of those diagnosed with an MPN when organizations like the NIH are looking at the big picture of what should be prioritized.
You have an opportunity to take action this September. We’ll be sharing ways to help you be vocal about the need for funding for research into PV, ET, and MF. We’ll also be sharing information from other organizations helping to educate patients and bring them together with each other and with experts.
We have come a long way in 15 years of funding MPN research, but we didn’t get here without the input and support of patients and their friends and families. So keep educating yourself and become a champion for MPN patients everywhere by supporting research and sharing your story. With your help we will get to a cure someday.
Barbara Van Husen
President, MPN Research Foundation