PXE Awareness

Volume 19, Issue 1 June 2013

 

President's Message

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President’s Message by Fran Benham

Those who have been involved with NAPE from its early days will recall frequent concerns expressed by Dr. Ken Neldner on the need for research specific to Pseudoxanthoma Elasticum. His 1988 book-length clinical description set the stage for that needed focus. His partnership with Dr. Berthold Struk from the early 1990s identified our ABCC6 gene and brought more attention to possibilities for research. This issue is dedicated to Ken Neldner who set PXE on the path to the research abstracts provided here.

We of NAPE are deeply grateful for the attention of those in the scientific community. We also thank the Massachusetts Society for Medical Research for our lead article which allows those who are not scientists to better understand what is quite complicated. NAPE will continue to monitor relevant research and to inform our members about it.

As this issue was being published, news broke of the U.S. Supreme Court decision that human genes cannot be patented. NAPE was one of many patient advocacy groups involved in the case. We were particularly concerned because our gene, identified by Dr. Berthold Struk, was almost immediately patented. The ruling and the impact of human gene patents on medical research will be the focus of our next issue to be published in August. In the meantime we rejoice in this good news.