Our Community is Beautiful

February 22,2018

We are a community that has been built up in the apprehension of living with what they call an “orphan” disease. Our chinks are mortared firm in the reality of there being no known cure. Many of you stand at the center of your families, an impossible reconciliation of loving each breath of life and never quite having enough breath for the life you want to live.

A rare community. What better way to celebrate our being together than by having our own day? Let us all thank the National Organization for Rare Disorders for being champions in celebrating and proclaiming the upcoming Rare Disease Day this February 28th. How wonderful to be a part of something that can bind us with those we will never meet on continents we may never set foot in.

A brave community. Our office at Team PHenomenal Hope has a constant stream of letters and notes of encouragement, of the stories of living with pulmonary hypertension that you ask us to publish and share so that others can learn of your journey. It takes courage to send in your photo and identify to the world that this is who I am, this is my journey, and while the end is unknown, I am here now, and I embrace life as it comes to me.

A championed community. Already, in 2018, we have XX athletes dedicated to training, racing, and fundraising on behalf of those living with pulmonary hypertension. They are supported by industry sponsors who value and recognize the value of investing in this fight. They will race in world class events and be joined by global partners from teams on three other continents.

A beautiful community. Each week, I see your pictures and stories. What a beautiful community we are – precious children at the beach, wives, mothers, brothers … regular folks from all walks of life – with smiles and hope; each is an inspiration to one another.

As we begin celebrations for the upcoming Rare Disease Day, please take a moment to reflect on what a community we are, how far we have come, and that as a rare, but brave, and championed, and beautiful community, none of you living with pulmonary hypertension have to be alone. We are your team.

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