It is difficult to explain how exhausting it is to prepare for our annual conference each year. It is an event with an unimaginable amount of detail requiring a herculean effort from our small team at HQ. As we reflect on the conference, we are energized by the outcome and the equally herculean efforts of our amazing volunteers. It’s is humbling to think about the number of people in our community who graciously step up to the plate to help us make our annual conference possible. As we reflect, we appreciate how lucky we are to be involved with such an amazing group of people, despite the yucky reason for our connection.
For so many, the PSC conference is the first time they actually get to meet another human with PSC or another caregiver or family member of someone who has PSC. When my husband arrived, he was asked, “How many other people do you know who have PSC? He answered “None.” He was immediately introduced to several others who have PSC. This question gave me great pause, because I saw him let his guard down for a brief moment. We had never really stopped to consider that we don’t come across people who have this disease or an understanding of how it impacts your life. Being introduced to others who have it was strange – these people know what it means to grapple with this disease and all the insidious ways it creeps into your life. For patients and their families, PSC is always there, bubbling beneath the surface. So, what does it mean to see this insidious disease in nearly everyone around you? It turns out, a whole lot. Suddenly, you are not alone. Suddenly, you are not the minority. Suddenly, you are understood. It is through these encounters that you realize how powerful it is to connect with real humans who share your fears and your struggles. See what this first time couple thought of their conference experience:
This is why the PSC Partners conference is so powerful. PSCers return from the conference re-invigorated and ready to face the world again, knowing there is a whole host of people out there who understand what you are going through and are willing to lend an ear. Creating the opportunity and forum for PSC patients and their families to connect with others and learn from experts about their disease re-invigorates us and makes the Herculean effort worthwhile.
See more videos and comments from social media and post-conference evaluations on our Annual Conferences page.
If you attended the conference and have additional thoughts to share about your experience. Please feel free to do so in the comments section below.
Rock on PSCers. We look forward to seeing you again in Sacramento next year!