This past September we attended the first-ever meeting for people with Pediatric MPN and their friends and family. Held in Chicago, this meeting was organized by MPN Advocacy and Education, International as part of their drive to educate and raise awareness about MPNs. MPN Research Foundation was there as a sponsor and to hear first person accounts of people whose young family members are now grappling with ET, PV and MF.
When you search for information about myeloproliferative neoplasms, what first comes up is that these diseases are more prevalent in people who are middle aged or older. But that does not exclude the possibility of younger patients. We have known quite a few people with an MPN who are either children or young adults, including current board members and board members’ family members (board member Stephanie Cindric spoke, along with her mother, Celia Miltz). Their stories and those of the other parents and young people provided a great deal of inspiration and clarity about what we must do as a community to keep moving ahead. We must better our understanding of MPN to identify better therapies and potential cures, while also raising awarenss and making connections within our community.
These fierce moms and dads are taking on the challenge of MPN on behalf of their kids, striving every day to ensure their kids have the best and longest life possible. As a parent myself I can relate to their drive, which is often greater for our kids than it would be for ourselves. And given that MPNs are a chronic cancer these young people and their parents may have the most to gain from longer term studies of the progression of MPNs (and of course from the more translational projects which we hope pay off sooner rather than later in terms of better outcomes and longer lives for all with an MPN).
MPNs in pediatric patients has become a specialty of one doctor in particular, Nicole Kucine of Weill Cornell. She has a Pediatric MPN center as an extension of the MPN Silver Center at Weill Cornell. She works closely with others in the MPN field to best help people with pediatric MPNs. You can read more about her suggestions for best care for pediatric MPN patients here: https://pediatric-mpn.weill.cornell.edu/patients
We are so grateful that MPN Advocacy and Education, International took it upon themselves to bring this group together and look forward to hearing about future meetings. You can watch the presentations and testamonials from the event here: http://mpnadvocacy.com/videos-pediatric-and-young-adults/