On November 10, 2010, I sat in a hospital room watching brave, 14-year-old Megan. She had just had a walnut-sized piece of her brain removed because nevus cells were there, causing her seizures. She rested comfortably, even with wires and tubes connected everywhere and a huge, crescent shaped scar marring the beauty of her luxurious, auburn hair. Megan had no idea that she just ROCKED THE NEVUS WORLD!
Please join us for the 2012 Nevus Outreach Conference
As we head into the Thanksgiving holiday, we want to pause and thank all the amazing people who have touched our lives at Nevus Outreach this year.
Would you like to attend the 2012 Nevus Outreach Conference for free? You can! You can earn your entire family's sign-up costs to attend the 2012 International Nevus Outreach Conference to be held July 4-7, 2012 at the Marriott Solana Hotel in Westlake, Texas!
You won't want to miss the Nevus Outreach 2012 Conference and Reunion to be held July 4 - 7, 2012 in Dallas, Texas at the beautiful Marriott Solana!
This year will bring some exciting new changes to the conference. For starters, we have added one more day to the length of the conference! We will be starting on Wednesday, July 4 and concluding on Saturday, July 7.
While medical research reviewing the effects of humor on specific health outcomes is still in its infancy, doctors believe that finding humor in everyday situations reduces stress, encourages relaxation, improves self esteem, and enhances a person’s overall quality of life.
Regional gatherings, phone and online support groups, and the bi-annual conference are all intended to support families affected by large congenital melanocytic nevi (LCMN) and/or neurocutaneous melanocytosis (NCM) and they do it with such a friendly flair.
Megan Fields, 33, splits her work week between teaching public speaking at the University of Tennessee and serving as Director of Development for Nevus Outreach, Inc. But her most important role, perhaps, is serving essentially as a role model for the young people in the Nevus Family and showing them that they absolutely can have a full and happy life and they can thrive.
Having been immersed in pediatric nursing for many years, Joan Fleitas, EdD, RN, knew kids with medical problems wanted people to know their conditions do not define who they are. She designed Band-Aides and Blackboards to communicate this central fact to youngsters, parents, teachers, and health professionals.
Until she was 16, in 1996, Jodi Unsworth thought she was the only person in the world with a giant congenital melanocytic nevus (CMN). It was then, however, that she met pediatric dermatologist David Atherton, MD, of the Great Ormond Street Hospital, in London. Atherton was the leading CMN skin specialist in the UK and it was he who first gave a name to the rare skin condition Unsworth had been born with and told her she was not alone.
We are pleased to announce we have secured the funding for another year of our largest ongoing scientific research project “Searching to Conquer” being conducted by Dr. Bernhard Wehrle-Haller at the University of Geneva.
The Grassroots Fundraiser Campaign is officially underway! In conference years, money raised in the Grassroots Fundraiser Campaign goes to offset conference costs. Anyone can put on a grassroots fundraiser - it’s easy!
During non-conference years (2011, 2013) it has becoming a tradition to have nevus gatherings in various parts of the country. These mostly social get-togethers give families a chance to share stories, play, talk about the latest developments and build camaraderie around our cause.
At the largest assembly of experts on large nevi and patients affected by them, in Tübingen, Germany, on May 6-8, over 100 people met to discuss current topics in scientific research and patient care.
In our effort to provide the best content possible, you may have noticed a new name in our bylines. Patricia McAdams, or “Pat” as we are coming to know her, is an award-winning journalist with more than 20 years experience writing scientific and medical copy for a general audience.
Did you know Kent Blount joined the staff of Nevus Outreach in December? It's been a big year, with notable events taking place on all fronts: support, education and research. Our needs in the office are not getting smaller, so when Carolyn Glass announced she had taken a new job, we reorganized our precious resources and created a full-time position for a new Office Manager.
Nearly 100 health care professionals and patient advocates met at the University of Tübingen, in Germany, on Friday through Sunday, May 6-8, to discuss the research, management, and possible future therapies for individuals with a large congenital melanocytic nevus (LCMN) and neurocutaneous melanocytosis (NCM). A major focus as well was to provide psychological support for families.
In December 2004, a landmark research study was published in the Proceedings of the National Academies of Sciences that linked psychological stress to premature aging for the very first time. Specifically, health psychologist Elissa Epel, PhD, and her colleagues, made the stunning discovery that the telomeres in the cells of chronically high stressed women were about 13 years older, on average, than the telomeres of low stress women.
Six months ago, we were strangers; today, we are the best of friends. Four families have come together in a strange city, all to face a challenge we never would have imagined. But as we have learned, blessings arise in disguise so many times, and the one here is obvious—truly wonderful friendships.
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