AEC and EEC Families: Dr. Colin E. Willoughby, prominent researcher @ our National Family Conference!!

You Have the Opportunity to Share Your Eye Concerns With Researcher

By Jack Kriz

I am so excited! I mean really, really, excited! Dr. Colin E. Willoughby will  attend this year’s National Family Conference! Who is this doctor? Well, early this year, NFED staffer Mary Fete, shared with me some info about a researcher from Belfast in the U.K. In 1996 this man, Dr. Colin E. Willoughby underwent a fellowship during which time he became interested in ectodermal dysplasia. His research has focused on the ectodermal dysplasias and the genetics of retinal degeneration, glaucoma and keratoconus.

By 2004, he was awarded a Doctorate of Medicine from the University of Liverpool in 2004 for his lab research in this area. Why is this exciting? It’s exciting because he has substantiated in research what some of us afflicted with ectodermal dysplasia, and specifically EEC and AEC, have known for years; that our ectodermal dysplasias have specific affects on the condition of our eyes that is more than a “dry eye” syndrome that is the norm. We do not merely have dry eyes, we have ectodermal dysplasia dry eyes, with unique affects on our dry eye condition from our ectodermal dysplasia.

Dr. Willoughby has developed links with the Veneto Eye Bank Foundation, Italy to pioneer the transplantation of genetically corrected corneal stem cells in the treatment of EEC syndrome. There is hope for us that a treatment will be developed! Since the 2009 Family Conference where a critical mass of AEC and EEC affected members brought our issues with eyes to the forefront in our break-out syndrome specific session, I have been waiting to hear of someone researching our very own specific affliction with the eyes and Dr. Willoughby is the first one! Yeah!

Join me in O’Fallon, Illinois this July as we corral him, in a very friendly way of course, to learn more about him, his research, and our hopes for the future of our eyes!