NHF 70th: Unite for Bleeding Disorders
While each of the 40 NHF walks set for 2018 are special in unique ways, our first in Albuquerque on May 5th took on a bit of added significance since it formally marked a transition in their name from “National Hemophilia Walks” to “Unite for Bleeding Disorders.”
But NHF’s rebranding of the community’s walks, in partnership with our 52-chapter network, reflects more than just a name change.
It marks a transition from what has been an extraordinary group of local events into a united, national movement that is coalescing the entire bleeding disorders community. And by “entire community,” I mean everyone with an inheritable bleeding disorder, whether it’s hemophilia, von Willebrand disease or a rare bleeding disorder. As you know, NHF has worked tirelessly for everyone with bleeding disorders for the past 70 years—but we felt it was time for the name of our walks to embrace everyone.
It reflects a growing awareness and understanding of bleeding disorders across the country. Now more than ever before, bleeding disorders are prominent on the nation’s health radar. Yes, this higher profile is due to coverage of a new age in treatment and, though years away, the prospect of cures. But it’s also due in large part to your advocacy — in state capitols nationwide and in the halls of Congress in Washington DC — to protect access to affordable, quality healthcare for not only people with bleeding disorders, but for those with all chronic conditions.
It signals NHF’s and the community’s readiness for the future as we work together in new and creative ways towards the goal of one day ending bleeding disorders. But it also acknowledges our our past and legacy. In fact, one new aspect of our walks that I find to be most moving is the “Pinwheel Experience.” It’s what we call “a mission moment”—an opportunity to demonstrate and recognize how we as a community are having a real impact on each other’s lives. During the “Pinwheel Experience,” we take a moment to acknowledge why and for whom we walk, and to remember community members who no longer walk with us because of their bleeding disorder.
If you’ve already registered for a walk, thank you. If not, I hope you’ll consider being part of this movement. Everything you need to know can be found at unitedforbleedingdisorders.org, including: a series of eight video guides; tried-and-true tips on fundraising; and a Unite mobile app that allows you to use your phone to send fundraising messages, post on social media, track your fundraising progress, and much more.
Your continued participation in and support of our walks program will enable NHF and its chapters to continue working to ensure all members of the bleeding disorders community live the lives they were meant to live. And that’s a great cause to unite behind.
As Vice President of Advancement, Brett Spitale leads NHF’s development, communications, marketing and walk programs.