Big Year for Nevus Science
2009 may go down in Nevus Outreach history as the year we blew the lid off nevus research! It's only February, and so much is happening. This is a note from Mark Beckwith, the Executive Director of Nevus Outreach, to accompany the March 6 First Friday Update:
Dr. Bernhard Wehrle-Haller let me know last week that his manuscript on our melanocyte replication inhibitor process has been accepted for publication in the peer-reviewed and highly-respected Journal of the Federation of American Societies for Experimental Biology. This is a major big deal. This is excellent news.
Two weeks ago we sent out the first 10 surveys created by Dr. Sven Krengel and our Nevus Science Group to learn more about hypopigmentation in people with giant nevi – this idea that the incidence of vitiligo (or other pigment-disappearing processes) in people with giant nevi is unusually large. Follow up on that data is scheduled for March 9. Once the smoke settles, we will release this study to all of you in our big nevus family and really get the data flowing!
In early February, our long-time friend and advocate Dr. Miguel Reyes-Múgica agreed to participate in a program where Nevus Outreach will arrange for his expert second review. The first two cases have already gone out and come back – in both cases he agreed with the original findings - which should instill in a patient a sense of confidence in their local pathologist. As a result, these expert pathology findings and the biopsy samples become a part of our ever-growing tissue and data repository.
As part of another ongoing research project, the radiology department at UC San Francisco, among the most respected giant nevus clinics in the world - has now read 13 MRIs for constituents of Nevus Outreach. This service is provided by Nevus Outreach at no cost to the patient, thanks to funding from the Morgan Family Foundation. The reports and MRI scans become a part of the tissue and data repository.
Earlier this week I met with a highly respected geneticist and pediatric neurologist from the University of Chicago – Dr. William Dobyns – who had stumbled on a genetic marker for Dandy-Walker malformation. DW is a cerebellar disorder. Unlike most markers, this one does not live in the place it affects, rather it lives in the meninges. Like vitiligo, we have noticed an unusually high rate of Dandy-Walker malformation in kids with NCM. DW is a cerebellar disorder, and we’re learning from studying the MRIs that people with NCM have an unusually high rate of cerebellar disorders as well. Plus, we know NCM definitely involves the meninges. Dr. Dobyns would like to see if the same marker he discovered for DW is present for NCM. PLEASE get in touch if you are a patient with DW (our registry already knows if you have NCM).
As I write this, I am in San Francisco, preparing to attend the annual meeting of the International Society of Digital Imaging of the Skin, getting completely up to date on the ongoing quest for ways to keep track of our nevi and ways to detect changes sooner.
I think 2009 may well be remembered for a lot of reasons, and Nevus Science will move foward at an unprecedented pace this year. Let's ride this together - get in, sit down, hold on!
Contact me any time to talk about any of this.
Mark Beckwith
Executive Director
Nevus Outreach, Inc.
(918) 331-0595 office
(918) 440-6123 cell
