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|The mounting cost of bandages is most often not covered by an EB family's health insurance.||89.4¢ of every dollar donated goes directly to EB patients, families, and research.|
2010 Patient Care Conference in Cincinnati Goes International
Everyone arrived on opening day eager for the speakers to begin. Since we chose Cincinnati as our venue the conference was a collaborative effort between Debra and the Cincinnati Children’s Hospital Medical Center EB clinic led by Dr. Richard Azizkhan and Dr. Anne W. Lucky. Without their help and cooperation the conference would not have been such an outstanding success. The first researcher to speak was John E. Wagner, M.D. from the University of Minnesota. Dr. Wagner and his team have been studying the use of stem cells to treat children with severe EB, RDEB and the junctional forms of EB, with significant successes. Dr. Wagner took questions from the audience who were pleased to get the information right from the source, as his research offers some hope towards a cure for EB.
On Thursday, the speakers’ topics ran the gamut from Wound Care Advances, Camps and Recreation, Rare Disease Legislation, Sexual and Emotional Health, Cell based therapies for DEB and Insurance Issues.
Hollister Wound Care sponsored a trip to the Newport Aquarium Thursday evening. Everyone loaded into our donated school buses (thank you to First Student, Inc. for your generosity) and headed to the Aquarium. Once they got inside the aquarium it was like they had stepped into a wonderland. It was such a wonderful experience that even the grownups were awestruck by some of the odd and beautiful creatures, the scary sand eels, the mesmerizing jelly fish, the stalking sharks and the ever hilarious penguins. It was a long and memorable day, with one more day to go.
On Friday, the last day, many important topics were covered. Nutrition and EB, Pain Management, Genetic Counseling, G-Tubes, Dilatations and GI Issues. Everyone listened to the last of the researchers explain their different approaches. All are working towards the same end, a cure for EB.
This year’s experiment with individual consultations with the doctors was a success and we hope to expand the program in 2012. The Debra team along with Tim Brown were able to get lots of photos to do some new brochures and the kids room was a success, with the kids making gifts for their Dads for Father’s Day. Everyone exchanged emails, phone numbers, and addresses and the last photos were taken. As Friday wound down one could feel the shift in mood as everyone started thinking about heading home. The next morning at Saturday’s continental breakfast we reflected on the previous few days. What we saw at the Patient Care Conference this year was hope, victories in different areas of research that will one day add up to a treatment and hopefully a cure.
See you in the West in 2012.