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.
You can read elsewhere in this newsletter about the huge success of The Gavin Bailey Tissue Repository for Neural Crest Disorders, notably about all the published articles that have become possible because so many people have worked so hard to preserve the actual cells (in many cases, living cells) of others who are affected by congenital nevi and neurocutaneous melanocytosis.
That’s a mouthful. The point is, all the support, data and information continues to flow at Nevus Outreach, almost like a landslide! It would not be possible without the help of those who are actively dedicated to our mission of providing education and support for those affected. I’m talking about the researchers, donors and volunteers who get it done, and all the people in the support network who are willing to share their experiences and knowledge with others. Again this year, we have taken a little space in this holiday newsletter to relay what people are saying about Nevus Outreach. I hope you enjoy those comments.
I would like to give a super-special shout-out to our Board of Directors, who, under Nevus-mom Anne Houseal's capable leadership, has grown to include more (and more actively engaged) members than it ever has. I look forward to another year of big dreams, including Version 2.0 of our Strategic Plan - to fine-tune what we already do well so we can do it even better, and to consider a broad range of new challenges building on the successes of the past five years.
In other news, it’s almost time to sign up for the 2016 Nevus Outreach International Conference and Family Reunion that will take place in Schaumburg, Illinois, from Wednesday, June 29 through Saturday, July 2. There are so many new things about this conference (in addition to all the great old things too) that we are including a page in this newsletter to get you to start thinking about attending it or otherwise supporting it.
Supporting it? The conference does not happen without a whole lot of people who believe in our International Conference and Family Reunion pitching in, be it time, talent or treasure. Our heartfelt thanks to all those who are doing so – we hope to make Conference 2016 the best one ever!
It’s a time of year to reflect, and honestly, can I just thank you for giving me the best job in the world? Thank you for making me the one whose voice gets to be used for this so much of the time, in Washington, at meetings and conferences where healthcare decisions are made, especially rare disease meetings and conferences. Thanks to you, this is all happening with nevus advocacy present in the room. Nevus Advocacy that is honed for the job and sometimes won’t take “no” for an answer!
If we don’t do it, it won’t get done. Just a friendly reminder.
It is my honor to serve all of you. Every single day I am reminded that I am not fighting the fight alone; that I represent a peaceful army of strong-willed advocates: patients, family members and friends.
I look forward to a 2016 full of new heights and record success!
At the International Conference on Rare Diseases in Mexico City - Ségolène Aymé is an INSERM geneticist and founder of Orphanet. She has devoted her distinguished career to raising the tide for all people with orphan diseases.
At the National Institutes of Health in Washington - Alex Silver is the father of a child with Epidermolysis Bullosa (EB), a disease even rarer than giant nevi. As CEO of the EB Research Partnership, he is leveraging over 43 million dollars he has raised for EB research. (And yes, I want to be like him when I grow up).