Reflections on DCC 2016

This year’s Debra Care Conference in Grapevine, Texas (just outside of Dallas) held July 24-27 offered many of the same valuable experiences as past events but it definitely felt like a new and different event. I wanted to share some observations and thoughts about the conference, including some changes or additions. The first noticeable change on the surface is the name, of course, taking on the organization’s identity as part of the conference title. This was a really good opportunity for families in attendance to connect with various individuals associated with the organization and specific resources available through the organization.

 

 

Each conference leaves its own distinct impression and carries a unique flavor from its predecessors in part because it is hosted by a new city and state when it is held every two years. This was the sixth event I have been a part of but I will admit that my own experiences are shaded differently than other attendees as I am on the Board for debra of America, I do work for a wound care company and was an EB parent, so I bring a unique balance of a variety of emotions to this event each time I attend.

 

I especially love seeing what the planners will offer children attending in the way of activities at that year’s venue. This year, the play area was in the same room as exhibitions and included everything from superheroes and cheerleaders to storytellers, musicians and even a monkey! Everywhere I looked, children were having a blast. One amusing aside: there was a sheriff’s convention being held there on the property at the same time as the DCC. The kids really made quite an impression on the officers in attendance, because they made a point of returning to the kids’ room to talk with them. These tough, no-nonsense authority figures suddenly became like big teddy bears as they interacted with the children. It was beautiful to see.

 

If you asked me what my favorite presentation was, I would not be able to single out any one person. I am always in awe of the extremely intelligent and genuinely caring health care professionals who work so hard to help EB families and take part in this event to meet them and answer questions. I enjoyed listening to all of this year’s presentations.

 

I did spend much of my time talking with attendees in the exhibition hall located just outside the presentation room. Another favorite part of the event for me is getting to visit with the families, some whom I have known for the past 12 years and other new families that I get to meet for the first time at the conference.

 

As always, I was very impressed with the Gaylord Hotels staff. This was the third conference in a row hosted by a Gaylord hotel, this time at the Gaylord Texan Resort and Convention Center, and I am constantly amazed at how well they accommodate such a large group of people. The unique way they can bring the outdoors inside and provide a setting that is safe, warm and uplifting to truly welcome our EB families is outstanding.

 

One of the changes made to this year’s schedule was that debra began many of the presentations later in the morning which was helpful to those families who needed the extra time for bandage changes in the morning or who wanted free time to explore the beautiful hotel. In general, there were more opportunities for free time this year which is a wonderful thing when families are getting the unique chance to meet up and visit with each other, and let their kids play together in a fun, safe environment.

 

A final side note: This year’s conference fell on my daughter’s birthday (she would have been 13 this year). It made being at this particular conference a little harder knowing that she could have been one of the kids hanging out in the teen room. But that is not the path I was given. I would not be working for a wound care manufacturer if it wasn’t for the experience she gave me. She has helped me help others and that is what was meant to be.

 

I hope everyone who got a chance to attend this year’s event took away valuable information and many happy memories. I look forward to the 2018 event already.

Looking Ahead to the debra Care Conference

What is it like to be a parent of a child diagnosed with EB? How are lives changed when family and friends become caregivers? What does the future hold for EB families in terms of treatments and any possibility of a cure for EB? It may be a small group of us who know these questions all too well or ponder them ourselves as we strive to look forward, but for those who live with EB every day, we quickly learn that the more information we can gather, the better our family and tight circle of friends and co-workers can tackle it.

 

Every other year, debra of America hosts a comprehensive forum of parents, caregivers, physicians, nurses, researchers, medical suppliers and other individuals and organizations focused on the impact of epidermolysis bullosa. This year, debra has scheduled its latest debra Care Conference (formerly known as the Patient Care Conference) for Sunday, July 24 through Wednesday, July 27, 2016 in Grapevine, Tex. at the Gaylord Texan Resort and Convention Center. If you are part of an EB family or invested in doing more for the cause, this can be a valuable experience and one I highly recommend looking into attending.

 

 

Information is regularly being updated on the debra website, so be sure to check back frequently for agenda and speaker details as they become available but here's what you should know now in order to register.

 

  • The hotel is located just outside of Dallas and if you've ever visited a Gaylord Resort before, then you know it is a completely awe-inspiring setting, a totally enclosed space beautifully decorated and populated by lush greenery and expansive, fun areas for families to explore without worry of the dangers of sun exposure or outside elements. Gaylord Resorts continue to be the ideal locale for this event, perfect for EB families looking out for those with fragile skin. You can learn more about this particular resort by clicking here.
     
  • As in the past, the organizers are doing their best to make available to attendees, primarily EB families, access to leading clinical researchers to share the latest about their progress in the field and representing some of the top facilities in the world with focused EB trials and treatment development underway. Attendees will get to ask questions and learn more from these experts as well as from each other as some relevant conversations are led by a variety of knowledgeable guest speakers.
     
  • If the information EB families take away with them and the spectacular resort experience weren't enough, probably the greatest part of all about the conference is the opportunity to connect with other families going through similar experiences. I've had so many people tell me that they've met some of their best friends and supporters in the EB community while attending a past conference. Our families may be spread out across the country, but at this special event, we all come together under one very big roof and get to talk, learn, play and share in a meaningful and sometimes life-changing way.Members of the EB community have shared with me afterward how this experience helped them truly realize they are not alone in their struggles. That could be the most valuable benefit of attending right there!
     
  • Registration is officially open now, so for those who have EB or with a member of the immediate household diagnosed with it, click here to register. All other individuals interested in attending may click here for more information.
     
  • If you're still not certain you want to attend, maybe stop by the site's FAQs and resolve any concerns or confusion. Also, I find it helpful to get a glimpse of past events sometimes when I'm making a decision on attending a conference. You can see links from the past three conferences at the debra site, as well. Click here for a look at the 2014 Conference.
     
  • This year, the conference organizers are launching something new, the DCC Express Yourself Challenge, open to both those planning to attend the conference and others who won't be able to be there in person. Debra wants to know people's feelings about being part of the EB community and their thoughts on past events, as well as expectations for this year's conference from those who will be attending. Click here to read up on how you can take part in the DCC Express Yourself Challenge!

 

The debra Care Conference is a unique experience that unites a diverse community in a way that encourages collaboration, interaction and education. I hope that you'll be able to join us. And if you are considering, please act soon. Each year, this event fills up quickly, and I wouldn't want you to miss out on this great opportunity. For more information about the site, go to the conference's main web page for details and contacts, should you have any other questions.

 

I hope to see you at the 2016 DCC! If you see me there, please stop by and say hello.