Looking Back at This Year’s PCC

It’s hard to believe it’s already been over a month since PCC 2012, but I did want to share some thoughts about this year’s event and some of the feedback that I received from families in attendance both while I was there and after I returned.

The venue, the Gaylord Palms Resort and Convention Center Orlando, was ideal for the event that continues to grow each time DebRA hosts it. In fact, I heard that we had about 80 families attending, which is our largest number ever, as some families also brought along extended family members and their caregivers, too. Between all of the attendees and the speakers providing this year’s presentations, we had at least 300 people enjoying the safety and security of the indoor hotel that was a great way for kids and their families to feel like they were outdoors with all of its greenery and vast amount of space and not have to worry about the damaging effects of the sun or heat.

Overall, the agenda was packed with well-thought-out topics, and things flowed smoothly during the conference. It was well-organized, and I was really happy to see so many new topics being discussed that had not been addressed before. In particular, I heard really positive feedback about some of the presentations on the latest research trials and headway being made clinically. I was happy to see some other interesting and relevant topics such as pain management, and a presentation by Dr. John Saroyan and Dr. Traci Stein during which they shared some more holistic approaches to pain management, including meditation and visualization.

I do wish that I could have popped into some of the presentations more often to hear the speakers that conference attendees spoke so positively about, but as always, I enjoyed getting to meet with the families, especially those whom I had not met in person before. And it was great to re-connect and in some cases meet for the first time some familiar faces who are getting involved in the EB community as advocates supporting patients and their families, such as Laurie Sterner (The Butterfly Fund), Jamie Silver (Jackson Gabriel Silver Foundation), and Christie Zink (This Little Light).

I also heard that many families got a chance to meet in person with other families that they had previously just interacted with online, via Facebook, EB Friends, or email. Occasions like the PCC are really as much about the connections being made and developed as they are about the information shared.

When parents were attending sessions during this year’s event, you could spot teens exploring the hotel or attending their own breakout session during the conference. You could also see the little ones were having a blast in the monitored Kids Room playing games, listening to tales by a professional storyteller, meeting up with a magician, and hearing from a professional wrestler who shared his own early experiences about being bullied as a kid and how he overcame these obstacles and learned to embrace what made him different. Families had a chance to meet some of the Gaylord Dreamworks characters during “meet and greets” throughout the hotel during the conference and take in dinner and a fantastic Cirque du Soleil show “La Nouba” as this year’s offsite outing sponsored by Hollister Wound Care.

So from the conference layout to the venue to the additional events and timing of all that was planned, I think overall everyone was happy that they attended the PCC, and personally, I was pleased with DebRA and their staff, and all that they did to plan such a fun, comfortable and relevant event for everybody involved. I’m not sure where they will be holding the next PCC, but I suspect–given the positive feedback many of the PCC attendees voiced while there–that other Gaylord properties would certainly be considered. In the past, DebRA has alternated locations from East Coast to West Coast each year, so I would assume that the next one planned would probably be in another region of the country, but that information has not been announced.

I heard from some families that they had wished there had been a little more time at the end of speaker sessions for more Q&A, so perhaps that would be one way that future presentation schedules could be adjusted to ensure the attendees really have the opportunity to get their main questions answered. But generally speaking, the positive feedback was overwhelming, and we saw quite a bit of it on the DebRA Facebook page, our own EB Resource page, and at my own personal Facebook page about how much fun everyone had and how much they learned, too.

On our EB Resource page, The EB Advocate happily noted, “Our team enjoyed seeing Shrek at breakfast. He is much taller than we pictured.” On my Facebook page, Elizabeth Schwartz shared her enthusiasm and appreciation for the family outing: “I wanted to thank Hollister for a wonderful and magical night during the EB PCC … Dinner at Planet Hollywood and the La Nouba show was so well coordinated not to mention all the buses that transported the families back and forth.” Faye Purpura Dilgen kindly wrote, “Big hugs of thanks to my EB moms out there who smile with their eyes and pour love and determination from their hearts. I see you with your kids and it gives me hope that I can get through this disease with you …Thanks to DebRA for bringing the world experts in EB research together to show us that hope.”

If you attended this year’s PCC and haven’t chimed in with your thoughts yet about the event, please take the time now to do so here or on our Facebook page.

Thank you again, DebRA, for a wonderful job bringing together many in the EB community for another very special event.

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