END OF YEAR 2019
December 30, 2019
We’re wrapping up another year on earth, and as such, everyone is reflecting on the notable events of the past year or even decade. There are so many highs and lows in the lifespan of a patient advocacy group. The triumph of funding your first grant, of raising your first $100 or $1,000,000. Of seeing a drug approved, and then another. Seeing people living with seemingly rare diseases connect with others like them and have a spark of hope that they are not alone, that the research community is working hard to find a cure for what ails them.
2020 will be the Foundation’s 20th year of existence. We have funded over $15 million in research, going towards 76 distinct projects, all to institutions around the world. The research we fund responds directly to the pressing needs we hear from people living with PV, ET, or MF. Proposals vetted by scientists working in MPN research from different disciplines and backgrounds and paradigms.
We are bucking tradition by not sticking to a numbered list of top moments (yet… that will come during our 20th anniversary). But here is what we were most excited about in 2019, laying the groundwork for the year and years to come:
- We saw the approval of Inrebic. It started as Fedratinib and changed hands several times before being resurrected by its original creator, John Hood.
- We produced the first fundraising video for the MPN Interferon Initiative, telling the story of why it is SO important for us to focus on this drug that works for some but not all who are living with an MPN.
- Held an externally-led Patient-Focused Drug Development Meeting focused on the MPNs. Videos of the entire meeting are available online. The Voice of the Patient Report will be coming out in 2020.
- We funded two grants focused specifically on progression:
- Ann Mullally’s project through the Center for Prevention of Progression of Blood Cancers at Harvard. Dr. Mullally’s lab has sequenced the genes of 1,000 people with PV, ET, and MF using their 100 gene panel. Our funding is to help them match the genetic data with the medical records for those individuals, telling a complete story about the intersection of various mutations with the clinical records (symptoms, CBCs, other health events)
- Belinda Guo in Western Australia is looking at platelets as a marker for progression. Dr. Guo’s preliminary work had been funded by Ruby Red Foundation in Australia, who remain a funding partner on this project with MPNRF. You can watch a video Ruby Red produced about their project with Dr. Guo here.
- We have funded 7 new MPN Challenge grants, which you can read about here.
- We saw the creation of the MPN Canadian Research Foundation, a win for the global community of people living with an MPN, and the researchers seeking to find answers and eventually more therapeutic options and cures.
It’s hard to assess your progress from year to year when you haven’t realized the ultimate success, which is the prevention of progression of a disease, or a cure. But this is why we have hope. Hope in the vein of Victoria Safford, who speaks not merely of optimistic hope, but of defiance of what is, towards a better future that we realize and act on, together. We’ve put a lot of irons in the fire and try to support promising research. We have a lot of hope that we are on the precipice of transformational therapies for people living with an MPN who need them, and a greater understanding of when, whether and what to try in this diverse patient population.