September 13, 2012
Five years ago, I didn’t know where to turn to. There was no resource available for PSC where I lived and no support whatsoever. I looked online to find help and found PSC Partners. I wrote to the contact person, the founder of the organization, and received several personal, warm, information-packed messages from her. Those made me feel the presence of a vibrant, proactive and unified community I was eager to explore and be part of. The first of five annual conferences I attended took place at the Mayo Clinic in Jacksonville. I couldn’t believe the magic that was in the air during the three-day long event. PSC patients, doctors, researchers, caregivers intermingled, excited to be sharing the same mission. That weekend, the discovery that this community would become my family, that I HAD to be a part of this incredible energy, had a life-changing impact on me. And since then, through the years, my PSC family has grown, and so have my roots and my involvement in this committed and amazing group. Eight years, eight conferences in important medical centers throughout the US, a widening circle of PSC families and medical thought leaders, and still, PSC Partners continues to be a close family while it spreads its magic. That PSC Partners, representing an obscure rare disease, could move PSC research forward, could give support to so many, and could build such a strong network is a beautiful example of the power of the human spirit, seen at its very best. For these reasons, I wholeheartedly support PSC Partners, its mission and its vision in every way I can.
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