July 13-15, 2022
From July 13 to July 15, 2022, approximately 300 people gathered in Denver for the Nevus Outreach conference. Marjolein attended on behalf of NNN. This conference takes place every two years for individuals with CMN (Congenital Melanocytic Nevi) and their family members. Due to COVID-19 measures, the 2020 conference was held online.
Nevus Outreach 25 years
The conference is international, with six individuals/families coming from outside the USA. In 2006, the Facebook group ‘Nevus Outreach’ was initiated. This has now become the largest Facebook group for individuals with CMN (Congenital Melanocytic Nevi), or other types of nevi, and/or their family members (5,500 members), including many from outside the USA.
40% of the attendees were newcomers. Attending a Nevus Outreach conference with a family can be quite expensive. The majority of visitors arrived by plane. Additionally, expenses include accommodation, conference fees, and meals. Nevus Outreach is exploring the possibility of organizing regional or virtual gatherings alongside the main conference.
This year, Nevus Outreach introduced a (free) membership to gain a better understanding of their members and their origins. Researchers (as per the report) also wish to utilize these contacts for their research endeavors.
The costs for this conference are covered through donations and fundraising efforts. At the end of the conference, an auction takes place where significant amounts are bid for various items and offerings. This event raised a sum of $54,000.
Photo: Board of directors, with CEO Lauren Isbell on the right.
Medical Guidelines for CMN in the USA
Dr. Yasmin Khakoo, Dr. Harper Price (Pediatric Dermatologist at Phoenix Children’s Hospital), Dr. Carrie Coughlin (Pediatric Dermatologist at St. Louis Children’s Hospital), and Dr. Deepti Gupta (Pediatric Dermatologist at Seattle) gave a presentation about a new guideline for the treatment of CMN in the USA. This is good news as different doctors can have varying opinions, resulting in differing advice on proposed treatments. The creation of a guideline involves specific procedures. It starts with a medical literature review. Subsequently, consensus must be reached on every aspect with all stakeholders, including patient representatives. The guideline is still in development.
At present, France and the Netherlands have medical guidelines for congenital melanocytic nevi.
Photo from left to right: Dr. Khakoo, Dr. Deepti Gupta, Dr. Price, Dr. Coughlin
Plastic surgery and the risk of melanoma
To remove or not to remove a large birthmark? This has sparked many sensitive discussions. On one hand, a decision might be made to remove a CMN (Congenital Melanocytic Nevi) for cosmetic reasons, while on the other hand, due to the risk of the spot becoming malignant. But does the risk change after a surgical procedure? There is no concrete data showing that the risk becomes smaller. Taylor Ibelli, a researcher under the guidance of Dr. Bruce Bauer (a well-known plastic surgeon for CMN removal in Chicago), is proposing a research initiative to establish a registry for individuals with a large congenital birthmark. Her research focuses on individuals who have undergone surgical procedures or not, categorized based on the type of procedure performed, and subsequently whether melanoma has developed or not. Data from long-term follow-ups are lacking. She is inviting conference attendees to enroll in the research.
Photo from left to right: Dr. Khakoo, Marjolein van Kessel, Dr. Bauer
Presentation on neurocutaneous melanocytosis (NCM)
Dr. Khakoo (Professor of Pediatric Neurology at Memorial Sloan Kettering, New York) is seeing an increasing number of patients with NCM (Neurocutaneous Melanocytosis) as patients seek her due to her expertise. In 2014, she saw 14 patients with NCM, while in the past year, that number has risen to 80. The increased time she had due to remote work during the pandemic allowed her to initiate new projects. She established a registry for NCM and its treatments. NCM can cause symptoms such as headaches, vomiting, epileptic seizures, as well as movement and vision problems. It’s not necessarily fatal, contrary to earlier beliefs. Currently, there is no targeted treatment available for NCM melanoma. The registry will enable researchers to better understand how the disease progresses and responds to treatments.
A youth coach
A youth coach is an expert in understanding and translating the world of young people. They serve as a positive role model and a trusted figure. Ash Tooray, who has congenital melanocytic nevi herself, is a youth coach at 2 Rays Hope. In this workshop, primarily attended by young individuals, she fostered a welcoming atmosphere in which young people explored how they manage emotions and cultivate self-love within themselves.
During the conference, Marjolein van Kessel organized an international gathering. International connections are crucial for Naevus Global, the international umbrella organization for CMN. Additionally, she delivered a presentation about the ‘patient journey for CMN syndrome,’ illustrating what we have accomplished with international meetings in Europe.
Every year, children worldwide pass away due to complications arising from congenital melanocytic nevi. Although the risk is not high, in cases where a child becomes severely ill, there are no available treatments. Nevus Outreach recognizes this issue and asked Marjolein van Kessel to take part, along with another parent (both their children passed away in 2012). In the main lobby, we set up a memorial table decorated with candles, flowers, and photographs of the children who passed. On Thursday evening, we organized a commemorative service. During the gathering, a video was shown. Approximately 25 families contributed to this event.