Describe your role in the MPN community.
I believe my role in the MPN community is to create awareness. Awareness means many different things: telling your story, telling a loved one or a friend, and being more open about discussing with a doctor what you are going through and how you are feeling. Perhaps be more open in sharing some of the silent symptoms like mental health struggles, which I can relate to. The point is that you may not realize it, but doing any of those things has a tremendous impact on not only the MPN community, but also the individuals who make decisions on research and funding for cures.
In your opinion, what is the significance of Rare Disease Month/Day pertaining to MPNs?
The significance of Rare Disease day is that it's a day that makes you realize you are not alone. I’d like to think that every rare disease day, there are newly diagnosed individuals or patients who are struggling, who discover, through the awareness and promotions on Rare Disease Day, a whole new support community and, as a result, are now being helped.
-Nicholas Napolitano