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As a developmental biologist, I have found my calling in applying what I have learned about normal embryogenesis to better understanding the pathophysiology of various human congenital malformations. Often these are rare diseases, and I work closely with patient associations devoted to those conditions and learning to live with them (or with the death of the child who had been afflicted).
Among these, the congenital melanocytic nevus (CMN) is one in which I have been interested for the longest time. I organized a conference last fall in Marseille specifically devoted to the basic biology, epidemiology and medical and psychological considerations around the largest and rarest forms of CMN. I have also assisted the existing worldwide patient groups to federate, which will help us help them build a prospective registry for further research.
I didn’t do it alone, of course. Mark Beckwith from Nevus Outreach, Inc. was the most active, and the only non-physician, member of my organizing committee. We innovated by asking all the speakers to make their presentations available online, behind an inexpensive but secure paywall, and by dubbing the presentations with the sound of their actual delivery. In some settings, this is known as a slidecast. The slides advance automatically in sync with the sound.
We also placed the videos, when relevant, of the Q&A periods following the talks. The titles of the talks in the programme are at this link, and the PDF with the abstracts and titles can be downloaded directly from this one.
The idea was to make a resource that would slowly garner hits over time, as I have done with some of my teaching in the past. However, the company hosting the slidecasts has decided to eliminate the slidecast offering for good, after seven years, in the next three months. After I paid for a subscription for a full year, of course.
So: 33 presentations from the ESPCR-sponsored International Expert Meeting on Large Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis in September, 2013, are currently available online. They are web-viewable “slidecasts” (author-approved slideshows with synchronized sound from the live presentations). In addition, there are 29 videos of the corresponding question and answer sessions. The slidecasts disappear at the end of April, 2014.
You can virtually “attend” this conference for only 25 euros (approximately 35 USD or 21 GBP) by navigating to this webpage. All proceeds will directly support building a prospective patient registry by the Naevus Global international federation of advocacy groups. I’m writing this to ask you to support a worthy cause and consider learning about the direct result of the developmental biology of a neural crest derivative, gone wrong in one particular molecular way (I’ll let you discover which).
After secure payment through PayPal using either a PayPal account or a credit card, we hand-distribute unique identifiers and the address of a restricted part of the Naevus Global site. There, the order of the program is reproduced, with hyperlinks to the slidecasts and videos.
Thank you for your interest in current research on congenital melanocytic nevi & neurocutaneous melanocytosis! I hope you find this resource beneficial and informative, and that you will support the patient registry initiative in this manner.
Heather C. Etchevers, Ph.D.