Please briefly describe your role in the MPN community
I’ve had the privilege and honor to serve as a Board Member for the MPN Research Foundation over the last 20 years.
In your opinion, what is the significance of Rare Disease Month/Day pertaining to MPNs?
The MPN diseases present unique challenges for patients, clinicians and researchers. In the early 2000s MPNs weren’t even on the radar screen for the vast majority of the hematological or scientific research communities. The diseases often went undiagnosed, or if they were, no disease specific therapies were available, and few young scientists were entering this specialty area.
But we have come so far from where we were due to increased awareness. That is not to say we are there yet, but we are well on our way. And to me Rare Disease Month is an opportunity to continue to increase that awareness among groups that are critical to understanding the disease better. That focus will ultimately lead to important scientific breakthroughs followed by treatments, and eventually a cure.
I pray for all those who are working diligently towards this goal, for those that support them, and for those afflicted who are patiently waiting for the results of their collective labors.