Made Your Summer Plans Yet?

 

 

 

 

 

 

 

 

 

 

 

 

We know it is only January but for EB families, we certainly hope this summer is already reserved for an important event for the EB community. For those who aren’t aware, this summer marks debra of America’s national conference, the debra Care Conference (DCC), held every two years and geared towards EB patients and their families. The conference, formerly known as the Patient Care Conference, is a wonderful opportunity for EB families to not only interact with each other but gather valuable information directly from EB community advocates, medical professionals and researchers, all while having a fun, relaxing summer vacation at a beautiful destination resort.

 

I’ve attended previous DCC events, meeting up with families and catching as many presentations as possible, and once again, I am looking forward to this year’s event. The 2018 DCC will be held July 22-25 at the Sheraton Grand at Wild Horse Pass in Chandler, Arizona, just outside of Phoenix. Speakers will be taking part and sharing information about the latest research being conducted to develop better treatments and find a cure for epidermolysis bullosa. There will also be wound care supply companies in attendance like Hollister Wound Care who I represent, and many of us will be on hand to answer questions and demonstrate products for families.

 

But aside from the obvious reasons for EB families to attend –the educational opportunities, valuable information and product samples as well as the beautiful hotel setting – the greatest benefit of all (in my humble opinion) is the chance to connect with other families that share similar experiences and challenges. When parents receive word of an EB diagnosis, they often feel alone in their struggles and questions, and the debra Care Conference reminds all of us that we are not alone, and that bond becomes stronger when people get to meet face-to-face and spend time together both learning about what they’re facing and simply enjoying some recreational activities with others with whom they can truly relate, no matter what part of the country they call home.

 

As with past conferences, debra of America will set up playrooms onsite along with fun activities that the children in attendance can enjoy supervised while parents go to presentations, talk to medical providers and vendors, and socialize with other adults.

 

July may seem far away, but this conference is a popular one, so I encourage you to sign up soon if your family plans on taking part. The DCC usually attracts around 600 guests from the EB community. If you’ll be joining us, make your reservation soon. Registration for the 2018 DCC is scheduled to start this month through debra. Keep up with their latest updates at their Facebook page or on their website at debra.org.

And to learn more about this year’s venue, visit the hotel’s website at wildhorsepassresort.com.

 

I hope to see you there!