2010 Nevus Outreach International Conference and Reunion
A record 351 attendees from eight countries gathered July 7-10, 2010 at the Marriott Solana Hotel in Westlake, Texas for the biennial International Conference and Reunion, an event for people affected by Large Congenital Melanocytic Nevi. Unusually wet summer weather did not dampen spirits or hamper activities, friendships, educational opportunities, or the YMCA dance during the packed four-day event.
To attend this important conference, families and individuals traveled from all over the United States, Canada and Mexico, as well as Germany, Norway, France, the United Kingdom, and Switzerland.
The conference was the sixth to be held since Nevus Outreach, Inc. was founded in 1997. For families of children and adults with large nevi, the conference can be a life-changing experience the first time they attend and a happy Nevus Family reunion thereafter. The scope of available support and information can be somewhat overwhelming for newcomers, especially those who’ve never met another person with a large nevus, but they quickly find themselves accepted into a loving family of people who know what they are going through.
Ice Cream and Dr. Katz
Attendees settled into the conference experience during the traditional opening night ice cream social. Speakers Robert Brown and Katy Wedgwood, both of whom are adults with large nevi, described their experiences, played for laughs and provided encouragement, while ice cream was consumed at alarming rates. The social wrapped up with a keynote speech by Dr. Stephen I. Katz, Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Dr. Katz addressed how the National Institutes of Health (NIH) views orphan diseases like large nevi. He also spoke about efforts Nevus Outreach can undertake, as an organization, to encourage assistance from the NIH.
A World of Expertise in One Place
Many of the world’s most recognized medical experts on large congenital melanocytic nevi (LCMN) were once again in attendance at the Nevus Outreach conference and hosted informative sessions throughout the next two days on topics ranging from the most recent general understanding of the condition to surgical management and recent research findings. A team of volunteers scheduled consultations with doctors throughout the conference, offering the opportunity for families to talk one-on-one with renowned nevus medical experts. The 2010 Nevus Outreach Conference Medical and Research Overview will be available soon for details in the areas of research and treatment, including recent genetic discoveries, the formation of a laboratory tissue repository, and the upcoming scientific conference devoted to research of large nevi and related disorders.
Kids and Teens
While adults socialized and sat in on informational sessions, children and teens enjoyed a wide variety of supervised activities and outings. Arranged by age groups, they had plenty of fun playing arcade and video games, making crafts, watching movies, swimming, and doing team building exercises. Youth and teens also attended special “Nevus Life” sessions, designed to help them work through some of the challenges they face as kids with large nevi or being the sibling of one. Other activities included a trip to the mall and the Conference Collage Project, memorable photo collages assembled by teens and later sold by silent auction to raise funds.
The Bright Brit
During her first trip to the Nevus Outreach conference, Jodi (Unsworth) Whitehouse, founder of the U.K.-based support and research group Caring Matters Now, spread a contagious cheer and enthusiasm. Aided by her charming Liverpool accent, Jodi also proved she could entertain a crowd with funny and touching stories of growing up with a large nevus. Jodi’s presence at the conference marked another step in budding relations between the Nevus Outreach association and its European counterparts. The medical research data and personal experiences that can be shared through such relationships have the potential to increase our understanding of large nevi, improve treatment options and possibly lead to a cure or prevention.
The ever popular Thursday night Pool & Pizza Party was moved to the nearby Solana Health Club, where larger pools, both indoor and outdoor, could afford more room. Hundreds of nevi family members invaded the health club, where dozens of pizzas were consumed and large nevi and surgery scars were proudly bared. Conditions outside forced most people to the indoor pool, where the sounds of splashing children and laughing adults echoed off the walls until the threat of nearby lightning strikes forced an early evacuation from the water and everybody returned to the hotel for improvised activities.
Inclement weather also caused a change of plans when it came to the traditional group photo. Originally planned to take place in an area next to the hotel that required descending a grassy hill, this area would have been very slick when wet. Organizers scrambled to identify an indoor location in case of rain, but the plan was scrapped at the very last moment when the rain let up and a flat area near the complex entrance served as the perfect spot. A hotel ladder served as a shaky perch for the photographer.
For the first time ever, methodical scientific research took place at the conference when 123 blood samples were collected for research purposes. This project, which included samples from 62 persons with CMN and 61 of their relatives, was characterized as “unprecedented” by Heather Etchevers, Ph.D., the chief science officer of the French congenital nevus association Nevus 2000 France-Europe, and a researcher for INSERM, France’s equivalent to the USA’s NIH. There she studies developmental biology, with a keen interest in how cells acquire their identity and how organisms develop over time. Dr. Etchevers went on to say “this is the largest cohort of patients in the United States with this condition to ever have their DNA analized.” Dr. Etchevers, one of the guest speakers at the conference, is also mother to Marjorie, a 10 year old girl with a large nevus.
Digital Body Imaging
In addition to the unprecedented blood samples, 85 full-body image scans were performed by Bill Witmer using the Derma-Trak Imaging System from Canfield Scientific. This is state of the art high-resolution digital body photography which dermatologists prescribe to patients with large nevi to keep track of all their nevi and monitor them for changes. The body scans will also become a part of the Nevus Outreach Data Repository, and used to for scientific study of nevus body coverage, color, and changes in nevi over time.
Adults with Nevi Session
Nineteen adults and two teens with CMN participated in a combined Adults with Nevi Session, emceed by staff member Megan Fields. Among those participating were several first-timers who had not previously met another person with a nevus, as well as several who had the same experience at the 2008 conference and appeared more comfortable this time around. The session provided an opportunity for the adults to share their experiences with one another, but more importantly, to share inspiration with the parents of children with nevi who were in attendance. For those parents it was encouraging to see adults with nevi living normal family and professional lives and to have the opportunity to ask questions in an informal setting. A good deal of discussion centered on the role of parents as protectors of their children with nevi, and how parental reactions to inconsiderate people affect their children. Most adults with nevi advised that parents should be sensitive to the child’s perception of such reactions and confrontations.
Late Night Socializing
With so many friends and so little time, many of the adult attendees, including Nevus Outreach staff and volunteers, made time each night to make their way to the comfortable hotel lounge for an hour or two of socializing and unwinding before heading off to a good night’s sleep and the day ahead.
Dinner Dance Fever
The last evening was reserved for the Dinner Banquet and Dance Party, a gala event enjoyed by all ages. After dinner, kids swarmed the dance floor to show off their moves prior to the start of a live fundraising auction, hosted by a tuxedo-clad Jon Gordon (better known as Leo’s dad). The evening also included a presentation of fundraising goals and results, as well as the winner of the first-annual Grassroots Fundraising campaign.
Executive Director Mark Beckwith presented Danielle Stamatiou as incoming board chair, and thanked Pierre Gremillion for seven years of service in the position. When the dance music resumed, it didn’t take long for the adults to hit the floor and join in the fun, which lasted for hours.
See You in Two Years!
We all made new friends and reunited with old ones, and all newcomers were warmly accepted into the “Nevus Family” for life. But alas, on Saturday morning and throughout the day most people said their goodbyes and left for home, uplifted by the experience, empowered with new information, and already looking forward to the next conference in 2012. For a few moments, staff and volunteers reflected over breakfast on the incredible success of the conference, then rose to the challenge of a new day working to provide support for families affected by large nevi, improving awareness, finding a cure, and of course, talking of the next conference. We hope to see you there in 2012!