November 2015 Articles
This is a story about a bunch of people all working together to accomplish something incredible. You’ve heard us talk for many years about how important it would be to have a tissue bank. After years of tireless effort, Drs. Miguel Reyes-Múgica MD and Cláudia M. Salgado MD PhD have built The Gavin Bailey Tissue Repository at the University of Pittsburgh Medical Center’s Children’s Hospital, with significant contributions from Travis and Cassandra Bailey, Nevus Outreach, the Morgan Family Foundation, and Dr. Bruce Bauer.
Season’s greetings to all people affected by large congenital melanocytic nevi! As we head into our 19th year, I am struck by the realities, on many fronts, of what we are accomplishing as a big family. My goodness, our Facebook community exceeded 2500 people this year. Our registry exceeded 1200 people this year, and those 1200 people are from 59 different countries. Our international consortium (Naevus Global) delivered professionally vetted information in ten languages. Ten. Languages
I’m glad to share a few exciting updates with all of our nevus families and friends. The Board of Directors of Nevus Outreach has been hard at work with Mark and the entire staff not only focusing on the coming 2016 conference, but fostering creative ideas on making Nevus Outreach poised for future success. During our fall Board Retreat in Chicago, we were reminded just how impactful Nevus Outreach is, when a new family was in Chicago with their child during a consultation with their doctor. We invited them to our meeting to learn who we are and what we do. Needless to say, it was a divine appointment and therapeutic for each of us as we spent time together.
Travis and Cassandra Bailey gave birth to their son Gavin in 2011. Gavin had not only a sizable congenital melanocytic nevus (CMN), but also profoundly symptomatic neurocutaneous melanocytosis (NCM). Shortly after his first birthday, Gavin succumbed to his fight for life. Gavin’s family worked hard to bring about the Gavin Bailey Tissue Repository for Neural Crest Disorders. Their dedication was, and remains, unceasing.
As 2015 draws to an end, we start looking to 2016 which means the Nevus Outreach office is gearing up for another unprecedented Nevus Outreach Conference, in 2016. After years of fielding comments about the Dallas heat and being on top of July 4th, we listened! This conference will take place just outside of Chicago, Il., in Schaumberg, from June 29th to July 2nd. We couldn’t be more excited for this conference, and we hope to see you there!