First Friday Update - October 3, 2008
Megan Fields, an adult woman with a nevus, was here in Bartlesville last week to visit with Kathy Wright and me about a new research project here at Nevus Outreach (more about that in a later issue). During the course of our conversation, she reminded us that we need to communicate more about what's going on at Nevus Outreach. It's a great idea! So, I've started a communication piece called First Friday. It will be a short look at recent news.
Conference 2008 update
A resounding success! Read about it on our website and watch for your conference newsletter about the middle of October.
NCM update
At our conference, several constituents who are affected by Neurocutaneous Melanocytosis (NCM – pigment in the central nervous system) decided that they had special issues that may not affect everyone. This month, we created a separate NCM Support Group. This group will talk about things that directly affect people who have NCM and are dealing with the symptoms. Our daughter has NCM, so my wife and I have first-hand experience with the additional challenges this creates (why didn't we think of this sooner? Duh).
In September we ran our first MRI through our newly-forged research process with Dr. Barkovich at UC San Francisco. This world expert on reading MRIs for NCM wrote the protocol on how to shoot the scans so today almost any MRI facility can scan for NCM. Dr. Barkovich has agreed to read these scans as a “second opinion” at no cost to the patient. His fee for this service is covered by a grant to Nevus Outreach from the Morgan Family Foundation. These MRI scans and Dr. Barkovich’s reading will become a permanent part of our international nevus data repository.
Personnel update
Finally I’d like to say THANK YOU for making it possible for us to hire Heidi Vasseur, who will become our new Administrative Assistant. Over the years the bar just keeps getting higher and higher in the office, and we’ve gotten to the point where someone like Heidi is desperately needed to keep information and support for people affected by big nevi flowing. Thank you so much for making this possible! You'll be hearing from Heidi occasionally, so we wanted to make that introduction. Thanks to our good friend Hilary Welch for filling in since August.
Until next month. Remember, if we don’t do this, nobody else will. You are nothing short of visionary for standing behind this dream. Thanks again.
Mark Beckwith
