Goodbye 2018, Hello 2019!
2018 has been a rough ride. The MPN Research Foundation lost its Founder and Chairman, Bob Rosen, on January 4, 2018. Many of us knew and loved Bob as both a leader and a mentor. We have grieved his death this year. We have also grown as an organization, striving to honor Bob’s legacy and do all we can for those living with an MPN and worried about their future.
We connected with 3,550 more MPN community members who signed up for MPNRF news updates. We also continued to grow our patient registry, myMPN, bringing the total number of US registrants in myMPN to over 900. We formed a new MPN Impact Council, an advisory board of people living with MPN who are sharing their valuable perspectives with the Foundation. We held 3 scientific meetings, one focused on the future of Immunotherapy in MPNs, another our annual Roundtable, a time to showcase the work of our current grantees and discuss unmet needs in MPN science and finally, the annual meeting of our Interferon Initiative. We provided financial support for a Stem Cell Transplant Timing Tool, helmed by MPN Forum’s Zhenya Senyak who convened leaders in transplant and MPN research and clinical work across the globe to weigh in. We helped the MPN Global Advocates Network host their 3rd annual MPN Horizons meeting, where we learned about the struggles of MPN advocates across the globe and forged new partnerships and friendships which will be beneficial for the global community of people living with an MPN.
We also added to our team, bringing on Lexi Moore to focus on Outreach and Engagement as well as expanded the role of Rick Winneker to the Director of Scientific Strategies. This brings us to a staff of 8. Not all full time, but 8 people who are dedicated to helping those with MPN, primarily from doing our part to advance research funding and advocacy.
We added donors, too, collecting gifts from 2,420 individuals this year, a 27% increase from 2017. We also collected funds from some pharmaceutical companies, gifts accepted with an understanding that our programs are our own to direct and execute and their role is to support our mission. We asked you what you thought about it, too, and received a bounty of thought-provoking feedback, the net result being keep going to raise funds but keep your integrity and focus on funding research that will make people better.
These gifts, together, help power all we do, from the reporting of fact-based research news that you need now, to basic information about the diseases. Most importantly, it funds the research that is so critical to improving people’s lives. In 2018 we funded just under $1 million in MPN research, focused on both high risk/high reward grants (MPN Challenge) and the kind of deep investigation that would not go on without our efforts (MPN Interferon Initiative). We are ready to put out our Request for Proposals for 2019 to keep pushing, while also looking for ways to support efforts to collect more and better data on progression from ET/PV to MF.
You are a part of this story of how we WILL find a better treatment and eventually a cure for all who need it. Here’s to one year behind us and another coming up, rich with possibility and promise. Thank you for standing with us.
About the Blog
Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..