2017 Annual Report
Board Chair's Message
We are proud to look back at 2017 as a year of change and progress. The MPN Research Foundation is grateful to the many individuals and corporate partners that make our work possible. Your support directly funds researchers working in the MPN field looking to better understand these cancers, and looking for new treatments and a cure.
Report From The Executive Director
The MPN Research Foundation has what sounds like a simple mission: fund research in the MPN field that seeks to further understand these cancers in the hopes of finding new treatments and a cure. More than half of the funds raised each year come directly from individual donors, who are themselves patients, or friends and family of patients. This is crowdsourcing at its core, and we take great care to invest these funds on behalf of the community responsibly.
Each investment decision is made in consultation with our Scientific Advisory Board which is comprised of MPN specialists who volunteer their time to ensure we have the expert advise we need. They weigh in on our annual grant process, and help the staff at the Foundation keep track of each grantee's work. We are grateful for their time and efforts on behalf of the MPN Research Foundation. Also crucial to our decision process are patients themselves. Patient need is an important criteria in our decision making process, and the hundreds of conversations our staff have each year with patients and caregivers heavily influences the projects we choose to fund.
In 2017, the MPN Research Foundation embarked on a new path. In addition to raising funds to support our MPN Challenge Grants program, we initiated three new strategies to further MPN research. These initiatives have been developed over the past few years and take advantage of collaborative relationships that the Foundation has cultivated, bringing together research teams from multiple institutions to share information and results. We hope these projects - myMPN, Progression Marker Project, and the Interferon Initiative - in addition to the MPN Challenge Grants, will lead to better outcomes for MPN patients in the near future.
Thank you for your support.
A large part of our work is focused on providing accurate and up-to-date information for patients and caregivers about myeloproliferative neoplasms (MPNs). Our staff of 7 responds to thousands of inquiries every year from patients trying to understand their prognosis and looking for resources that will help them better understand their treatment plan.
In 2017, the MPN Research Foundation:
The MPN Research Foundation funds a variety of projects and initiatives that seek to better understand and treat myeloproliferative neoplasms (MPNs). Below is a full list of our programs with a brief description of how they progressed during the 2017 fiscal year.
The MPN Challenge Grants program issued a Request For Proposal (RFP) in January 2017. We received 45 applications and in July 2017 selected five new projects to receive $100,000 per year for 2 years, pending appropriate progress. The 2017 Challenge Grant winners and details of each project can be found here on our website.
In September 2017 we formally launched myMPN, the first-of-its kind patient registry for MPN patients in the United States. This project took most of the year to get off the ground, and after beta testing with 100 patients during the summer months, we were ready to launch in conjunction with Blood Cancer Awareness Month. This registry collects patient-reported data that the Foundation manages. The intended purpose of this data is to serve as a resource for researchers in the MPN field. By the end of 2017, myMPN already had over 300 registered users, and plans were in motion to expand access to the registry overseas.
In 2017 we took a stand on the issue of progression and promised to launch a study that would answer questions about which people with PV or ET would transform to MF. We are calling this study the Progression Marker Project. Working with Drs. John Crispino, Raajit Rampal and Srdan Verstovsek, the Foundation held some initial planning meetings to describe the study and goals. The vision is to create a vault of patient blood samples spanning a minimum of 5 years, which the Foundation would safely make available to qualified researchers who would look for patterns in symptoms and genes that could tell us who is progressing and, most importantly, how to slow or stop that progression. We hope to have an official launch for the project at the end of 2018 or early 2019.
Advocating for Patients
In 2017 the MPN Research Foundation had several meetings with FDA officials to discuss ways that our organization and the patients we serve can play a role in the advancement of new drugs through the approval pipeline. Specifically, we discussed how we may be able to influence clinical endpoints. The definition of endpoints can create barriers for new treatments reaching the market, and we believe that patient experience should play a larger role in the determination of those benchmarks.
We are incredibly proud of the $2.32 million we raised in the 2017 fiscal year (December 1, 2016 - November 30, 2017). More than half of these funds were raised directly from individuals - patients, family, friends, and medical professionals in the MPN field - and estate gifts. This level of support is truly humbling, and we are grateful for those in our community who have the ability to contribute in support of our mission.
This year, we are formerly honoring our thousands of donors in a listing that can be found here. We are thrilled with the number of people in the MPN community that choose to support our mission. Some of our donors have been giving to the MPN Research Foundation for 10 years or more, and to honor these individuals we have created a special recognition in this year's annual report. We also give special thanks to our Sustaining Donors who have given $25,000 or more to the Foundation since our founding.
Some of the funds raised in 2017 came from individuals who left the MPN Research Foundation in their estate plans. These gifts are bittersweet as they mean one of our friends has passed away, but these funds help ensure the long-term goals of the Foundation will be met. These donors will be there with us in spirit when we find a cure.
The MPN Research Foundation is committed to responsibly investing resources on behalf of the MPN patient community while keeping administrative costs low. In the 2017 fiscal year, we were fortunate to bring in more revenue than expected, allowing us to add a significant amount of funds to our reserves. These funds will help us with some of our larger initiatives that we expect will raise our expenses in the coming years. If you are interested in seeing a more detailed account of our financials, click here to download a pdf of our FY17 Financials.
We Are Here to Help
The MPN Research Foundation was created by patients for patients, and we are here to help those living with an MPN and their families find information, support, and hope for the future. Over the years we have steadily grown, both in our ability to fund new research and in our ability to field questions from patients. We hope you reach out if you have questions, need some advice, or if you just need to talk! It is important that we keep patients connected to the work being done in research labs. We communicate with the MPN community through our bi-annual newsletter (spring and fall), through our monthly email digests, and through social media. If you want to stay up-to-date on the science, or if you'd like to feel more connected to the MPN community, we encourage you to sign up on our website and like our page on Facebook.
We are carving a new path forward for MPN patients and your support is crucial to our success. Together, we can find a cure.