Lessons from today’s #NHFWD advocacy day: start by listening. I thought I knew #bleedingdisorders - and was I ever wrong. Every member of our team carried a whole universe of stories. I learned so much, just by being there, and hearing about my teammates’ experiences. 1/
It’s easy to dismiss something as ‘just how it is,’ and miss the strength that it can take to live a life with challenges. I’m humbled by what people can carry through their day, and the grace with which they do it. 2/
Our team had people of a range of ages, backgrounds, geographies, contexts, and we all chose to be present. Made it possible to be present, to share our community’s challenges and needs. 3/
It is so damn hard to be that vulnerable. To be that honest. To share the raw edged parts of your life, if only because you share them, we have to admit that they are there. The pain. The fears. The struggles. And yes, the triumphs. 4/
Two things make it possible: 1. coming together with others for a shared purpose, each of us bringing our own experiences and truths. Knowing it takes all of those perspectives - and more - to begin to understand our community. 5/
And 2. talking to legislators who came to Congress to serve the people they represent. Who value their staff taking time to listen, learn and connect. Your care makes it possible for us to speak. Your listening teaches us that we matter. Thank you. end/ #NHFWD 
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