2012 Nevus Outreach International Conference and Reunion
By Patricia McAdams, Staff Writer, Nevus Outreach
One Magical Meeting
More than 400 men, women and children attended the 2012 Nevus Outreach Conference and Reunion held July 4-7, 2012, at the Marriott Solana Hotel in Westlake, Texas. They journeyed from Australia, India, New Zealand, South Africa, and the Middle East; from France, Germany, Norway, Poland, Sweden, Switzerland, The Netherlands, and the UK; from Argentina, Brazil, Canada, Columbia, Mexico, and across the United States. One family drove all the way from Palmer, Alaska, only to be stuck in Whitehorse, Yukon for three days while engineers rebuilt the only road through town, which had washed out. But they kept on coming, their enthusiasm for the Conference fueling this grueling 5,500-mile trek one way, because “turning back was never an option.”
Because Of Her Nevus
Jodi Unsworth, the vivacious founder of the UK-based support and research group Caring Matters Now opened the conference by sharing the story of her life. This journey began in Liverpool with a wicked giant nevus laden with open sores, followed by a childhood of surgeries, missed school, and gawking physicians. It took her to London, at age 15, where she was only then diagnosed with a large congenital melanocytic nevus (LCMN) and asked to support others like herself. Saying “yes,” opened the door to countless surprises in the years ahead — including inspiring a climb to the peak of Mt. Kilimanjaro, last fall, where she and her team raised a stunning £80,000 for research for LCMN. With her delightful Liverpool accent and charm, Unsworth wowed the crowd with her many funny stories, repeatedly pointing out that all the amazing things that have happened throughout her life, happened not in spite of her nevi, but because of it.
Following A Dream
On Friday morning, we traveled virtually to California to meet professional baseball player Matt Luke. Luke was born with a facial nevus that prompted classmates to call him “scar face” or “dirt face” and made his school days miserable. Luke struggled finding an identity, at first, but his passion for baseball and the love and support of his family changed everything. He called an end to the surgeries to remove his nevi when he was 9 and went on to develop skills on the ball field, where he was finally accepted. These skills ultimately took him to Dodger Stadium and other stadiums across the country. Luke has since opened the Matt Luke Baseball Camp for other boys who love to play ball. In talking about acceptance, Luke encourages kids to persevere, share stories with one another, and be proud to be part of the Nevus Outreach Family.
Science At The Edge
Twenty years ago, there were no organized collaborations to understand LCMN and related condition. Since the advent of both Nevus Outreach and the Internet in the mid-1990s, however, much progress has been made in organizing and sharing knowledge among interdisciplinary scientists worldwide. These scientists now work together as part of the Nevus Outreach extended family, accumulating data, testing theories in pursuit of a cure, and caring for families affected by nevi. This month they traveled from Brazil, France, Germany, Mexico City, Switzerland, and across the United States to join families in Texas to share what they are learning with one another. Reports on these and other Conference sessions will be posted online in the weeks to come.
Caring For A Child With A Nevus
Parents attended a number of sessions intended to help them best manage their child’s nevi and related conditions. Whether or not to remove a nevus is a personal choice and is not right for everyone for many reasons. For families considering this option, however, physicians described the tissue expansion/nevus removal surgery favored in the United States and those procedures commonly practiced in other countries. Similar sessions were devoted to skin care and cosmetics, and how to help a child respond to the psychological challenges of having a nevus. Families also met with physicians one-on-one for private consultations. An Ask the Expert panel at the end of the conference provided a final opportunity to ask any lingering questions.
Participating In Research
Nevus Outreach Families regularly participate in scientific research via the Nevus Outreach Data Registry and the blood donation event at the 2010 Conference. This year, dozens of children and adults participated in research soon to be published in the Journal of the American Academy of Dermatology, related to new categories proposed for CMN. These new categories are intended to classify nevi in accordance with size, location, color, hairiness, and other features, thus standardizing terms for clarity when collaborating with scientists in other countries. Forty-three individuals had their nevi measured, counted, and coded, thus validating the proposed new categories.
Nevus Outreach Conferences are life changing, according to both Adults With a Nevus (AWN) and parents of children with nevi. Several sessions offered AWNs, parents, and moms and dads separately, a chance to talk about what’s on their minds. They also brainstormed strategies to help children, in particular, develop resilience to the challenges they may face because they may look different from others.
Just For The Kids
While adults report countless benefits from this biennial gathering, the Conference in many ways is directly or indirectly for those still growing up with a nevus. During adult sessions, kids and teens were whisked about Texas on a variety of field trips that, this year, included trips to Sea Life Aquarium, Six Flags, LEGOLAND®, and, of course, to the mall and movies. And then they headed to the pool, where the word is that a number of girls wore bikinis for the very first time. A number of “Nevus Life” sessions were focused on our youth, as well, allowing kids, 8 to 12, and teens, 13 to 17, to talk about the special challenges they face as children with nevi, and siblings of children with nevi. One expert who led these sessions was blown away, commenting on the “strength in character that occurred as a result of having a nevus. It made me wonder about the resiliency that is built in for children with a nevus, when they get good support from their parents.” What struck another leader the most was “that everyone was very positive and optimistic.” Yet another found the kids “fun, soulful, kind, thoughtful, compassionate, and witty. As Jodi Unsworth said in one of her inspirational talks, perhaps some of the resiliency we see in our kids is not in spite of having a nevus, but because of it.”
Angels, Angels Everywhere
A special luncheon was held during the Conference to celebrate the contributions of 82 Nevus Outreach Angels and thank them for their regular contributions to the group. Inspired by this easy way to donate to a good cause, an additional 34 individuals chose to become Angels. All together now, these 116 Outreach Angels currently give more than $4,000 a month to maintain the operation of Nevus Outreach.
Oozing With Talent
For the first time, Nevus Outreach Families were offered an opportunity to participate in a talent show one evening after dinner. While a couple of parents entertained the group with their amazing voices, this show was, in fact, an astonishing performance by the youngsters, teens, and young adults in the group. With a stunning level of poise and confidence that many adults present could never have equaled, these young folk played musical instruments, danced, jumped serious rope, read poetry, and sang their hearts out. They brought down the house again and again during their performance.
Raising Awareness Around The World
About two dozen representatives from countries in Europe, Asia, and the Americas met to brainstorm where to go from here in raising awareness about LCMN among families and physicians around the world. Individuals discussed various outreach efforts that work and those that do not. Strategies discussed for moving ahead include sharing resources with one another; starting support groups in Brazil, Columbia, India, Mexico, Switzerland, and other countries; and creating a global Web site and registry, both of which are in the works. See naevusglobal.org.
Dazzling Dinner Dance
By Saturday afternoon, kids of all ages headed to the conference spa for manicures and beauty preparations for the Dinner Banquet and Dance Party and a final evening with both new friends and old. And a balloon-bouncing, horn-tooting party it was. Wherever you looked, groups were huddled together and smiling for a camera, or dancing to lively music with joyful abandon, socializing, and just plain having fun.
In summary, the 2012 Nevus Outreach Conference, like other conferences before it, was a place “where magic happens,” according to Robin Cowper-Casal, who along with the Nevus Outreach staff and volunteer leaders, led a bigger team of nearly 60 volunteers. The diligence and toil of these tireless volunteers made this meeting a reality, inspiring the human spirit in ways impossible to put into words.
In The Awakening, a movie based on a true story by neurologist Oliver Sacks MD, Dr. Malcolm Sayer, played by Robin Williams, says, “The human spirit is more powerful than any drug and that is what needs to be nourished. It is work, play, friendship, family. These are the things that matter.
Work, play, friendship, and family perfectly describe the underlying tapestry upon which the 2012 Nevus Outreach Conference and Reunion was fashioned. The human spirit was so nourished here in Texas this year. We hope you can join us next time and experience this magic for yourself. Be sure to mark your calendars for July 2-5, 2014. Looking forward to seeing you then.