MPN Research Foundation To Be Presented  Leadership Award 




May 6, 2014 -- NORD announced on April 1st that the MPN Research Foundation was to be presented with their Abbey S. Meyers Award, which is presented annually to a NORD member organization that has demonstrated exceptional leadership in representing its members. I am honored to accept this award on behalf of the Foundation at the gala, to be held on May 8th in Washington, D.C. 


Abbey S. Meyers was the President of NORD for the first 20 years of the organization. Her namesake award was established at the time of her retirement. NORD is an advocate both for individual patients as well as organizations that address rare disease. NORD offers networking opportunities for member organizations, patient assistance programs, is a leader in policy initiatives related to rare diseases, and shares information critical to the success of pursuing education and research goals for rare disease organizations across the United States. 


I am proud to accept this on behalf of the community of people living with Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis who find value in our mission. We are a driving force behind research innovations in the field of MPNs, filling a critical funding gap for new and established researchers and providing direction for research priorities, and we could not do it without the support of the patients and families who fund and support this work. 


When I helped found the organization in 1999 (then called MPD Foundation) I imagined we'd raise a little money to fund a project here and there. What has happened has surpassed my wildest dreams. Since inception, our research investments have touched on nearly every discovery of substance in the field of MPNs. 


Despite this, as someone diagnosed with PV, I know first hand that advances are not the same as cures, which is why we are pushing harder than ever with a planned $1 million in grants this year. We're looking forward towards innovations like immunotherapy and genetic sequencing to help move us closer to the treatments we are all waiting for. I thank you for your continued support of our efforts. As we like to say, we were founded by patients, for patients. 


Yours truly,


Robert Rosen

Chairman, MPN Research Foundation 

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