Categories: Newsletter

by Anne Houseal, Chairman of the Board

Nevus Outreach is growing! Growing in awareness, growing in research and growing in support. This has been a fabulous year!

One of the most inspiring people we met during the first Nevus Conference my family attended in 2004 was the iconic, Megan Fields. She is a powerhouse of energy and a dynamic role model who helped blaze a trail of confidence others now travel. Then in 2013 and 2014, Rick Guidotti captured the spirit of those with CMN through his stunning photography, educating the world on what we already know...those with Congenital Melanocytic Nevus (CMN) are beautiful! This past year, awareness of CMN reached national news with uplifting stories about a professional dancer from Los Angeles, California, Cassandra Naud; a jubilant teen, Ciera Swaringen from Rockwell, North Carolina; and a strong and confident mother, Ferrin Francis from Baton Rouge, Louisiana. These ladies offer hope, inspiration and demonstrate joy in their lives.

Research and finding a cure is the toughest aspect of our mission at Nevus Outreach, but even here we have seen growth! To date, over 30 peer reviewed medical papers acknowledging the contributions of Nevus Outreach have been published. Most notably is the unprecedented work and research performed at the Gavin Bailey Repository for Neural Crest Disorders. This extraordinary work has produced an astonishing six papers just in the past 18 months! That is HUGE! Continued discoveries such as these may lead to more developed advancements in medical science and a treatment or cure for NCM/CMN.

On the fun side of life, Regional Nevus Gatherings are growing in number. This past summer on our way to drop off our twin daughters at college, we attended a Regional Nevus Gathering in Omaha, Nebraska. How fun to reconnect with those we knew while meeting and being inspired by new members and their families. Driven by that gathering, once back in Alaska we reached out via Facebook for any Alaskans with CMN. We were pleasantly surprised when Jeanette responded to our search telling us of her daughter, Lindsey. Their family has lived here in Alaska for six years but only found Nevus Outreach in the last 8 months. So let me encourage you - keep reaching out and setting up Regional Gatherings; simple or grand, you are bound to expand your nevus family.

Lastly, thank you for your support of each other. It is our hallmark. Social media has grown our Nevus family such that our informal Facebook group now boasts over 2,500 members and we are connecting more and more with people around the world. You encourage and strengthen each other. You harness the wisdom of our more experienced members to educate those seeking answers. You comfort new parents and grandparents and offer shining advice through a sea of issues: insurance, doctors, school concerns, at home care, and emotional issues are just a few areas to mention. Your coaching and encouragement make it easier for those with questions. You take the worry out of life and replace it with compassion and support. We hear good news stories in other countries, like India, starting up their own support groups or Facebook pages. We hear touching stories of those who recently came to us as frightened new parents and now they offer sage advice to even newer parents. I am overjoyed to witness the warmth, care, and compassion you offer to each other. Nobody welcomes and supports overwhelmed families better. Nobody. You are fabulous...all 2500+ of you.

As this year draws to a close, we reflect gratefully on our growth as an organization, our successes with research, our support for each other and the joy, caring and compassion with which we accomplish it. To our donors, thank you! Your continued financial support of Nevus Outreach makes a difference in the lives of so many.

Here’s hoping we meet at Conference 2016! I am honored to serve.

From The Last Frontier,



Lindsey, Angela, and Lucas at the Nevus Gathering in Alaska

Last Frontier Nevus Gathering: (L to R) Lindsey, Angela, and Lucas


Rita, Jack, Angela, Nate, and Dillon at a Nevus Gathering in Omaha

Omaha Gathering: (L to R) Rita, Jack, Angela, Nate, and Dillon

More from our newsletter:

Conference Talk

The Latest From Mark Beckwith

Mike Loehr Fundraising Update

One Hotdog at a Time

The Gavin Bailey Tissue Repository

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