By Patricia McAdams, Staff Writer, Nevus Outreach
Mark Beckwith, Megan Stewart, and Kathy Stewart
Identifying the best ways to raise awareness about a rare disorder such as congenital melanocytic nevi (CMN) has been a learning curve for players everywhere. About two dozen representatives from countries around the world met in Texas at the last Nevus Outreach Conference to share what they had learned, to review what had been accomplished recently, and to brainstorm how best to move forward from here. Mark Beckwith, director of Nevus Outreach, led this session.
Lessons learned. What works? What doesn’t?
Curiously, some strategies one suspects would be sure to be successful for raising awareness have proven anything but. Especially disappointing for most was that monies spent on brochure campaigns often are not fruitful. One stunning effort by Nevus Outreach to 11,000 dermatologists had little or no impact, for example. Similar poor results occurred in France, where a huge brochure campaign there was deemed a singular waste of time.
But Jodi Unsworth, who founded the UK support group, Caring Matters Now, says that when they first started, they did a booklet drop to the majority of health centers in the UK. In the UK, though, Unsworth works in tandem with dermatologist Veronica Kinsler, MD, of the Great Ormond Street Hospital for Children (GOSH), who frequently speaks at medical conferences in and out of the country, raising awareness.
“And we write articles about individuals,” Unsworth says. “My story, Lucy’s story, and others are on our Web site. That’s what pulls in attention. Our focus on the Charity Climb on Mount Kilimanjaro raised awareness among the general public too.”
Together, the concentrated efforts of Kinsler, Unsworth, and others to both health care professionals and families have made a huge difference in their small country.
With permission, groups can also share literature with similar organizations, Unsworth says, adding that Caring Matters Now adapted excellent medical marketing materials from Changing Faces for their own support group.
“One long day, we rewrote everything, so it was all about CMN,” she says.
Being “rare and militant” apparently raises awareness, as well, someone suggested. Think about Tourette’s Syndrome, which was virtually unknown 20 years ago, but is recognized today. This suggests that folks affected by a nevus might become militant too, drawing the line, however, at sensationalizing this disorder. Television once had been a considered a possible tool for raising awareness, especially the big name shows like Oprah, but the idea was discarded because of the tendency for TV shows to exploit those who may be different.
On the global front
At the conclusion of the Nevus Outreach International Conference in Tübingen, Germany in May 2011, participants voiced the goal of working toward a global nevus umbrella organization to avoid redundancy and more efficiently care for people affected by CMN. Specifically, the goal was to create a single global Web site and nevus registry to share information and support families with CMN. Participants also wanted to advance rare disease research into therapies and a cure for CMN, beginning with a tissue repository.
So much has happened since then.
Naevus Global is now online. This site immediately links browsers to support groups in over a dozen countries.
The Nevus Outreach tissue repository was launched this summer at the Children’s Hospital in Pittsburgh, headed by Miguel Reyes-Múgica, MD. Reyes is chief of pediatric pathology and director of laboratories at Children’s Hospital.
Nevus Outreach was one of a handful of patient organizations chosen to be part of a pilot program of the Global Rare Disease Registry at the National Institutes of Health. A tissue repository is useless unless it is married to patient information, hence the importance of patient registries. This online registry will be a secure environment to protect properly consented de-identified patient information. Beckwith sees this platform as a key step in making research data go international.
New classification standards with consistent terminology have been proposed to facilitate collaborative studies among both clinicians and researchers around the world.
Getting to know you
Everyone agreed that meeting others face to face was about the best way there is to raise awareness, move forward, and energize all the players affected by CMN.
Looking back, Beckwith remembers what he now knows to be good advice he received when Nevus Outreach proposed to to do a second mailing – this time to more than 67,000 pediatricians and dermatologists. At that time, “Our funder told us, ‘You are going about this all wrong. It’s an easier job to appeal to sub-specialties. Become friends with pediatric dermatologists, instead. There are only 300 of them.’”
Beckwith learned that lesson well when the brochure campaign yielded poor results. Meeting and greeting is what Beckwith does now. He attends annual meetings of the Society for Pediatric Dermatologists and is connecting with these doctors, who see patients with CMN. “We get a really good bang for our buck by networking with these physicians, who see all the patients with CMN,” he says.
Beckwith takes his responsibility as director seriously, his passion for outreach fueling a robust travel schedule. In the past year, he met with patients, scientists and physicians and lawmakers from coast to coast, and abroad. “If Nevus Outreach were not the moms’ idea,” he confides, “I don’t think Kathy, my wife, but more importantly my daughter’s mom, would tolerate my travel schedule.”
With the logistical aid of Facebook and the Nevus Outreach Support Group on Yahoo!, regional gatherings occur regularly across the country. Patient support groups are growing globally, too. “The idea of starting new groups in other countries is daunting,” Beckwith says. Yet because of the inspiration of their founders — often empowered from attending an international conference somewhere — new groups have recently surfaced in Germany, Israel, and Portugal, and others are in the works in Argentina, Mexico, and Switzerland.
“Imagine being a new family meeting others with a nevus for the first time,” says Beckwith. “It’s a roomful of life that cannot be equaled.”
As a result of the Nevus Outreach Conference, and similar meetings in countries all over Europe where more and more CMN patient families are meeting each other, the number of countries with CMN patient associations is expected to almost double in time for the International Expert Meeting on Large Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis to be held in Marseille in September.
“This is scary to a lot of people, but to folks like Jodi and me who have been at it for a while, it’s a welcome challenge, and the rewarding result of a lot of hard work on the part of a lot of families.”