I’m on a plane back home from 2024 World Vitiligo Day celebrations in Indianapolis! This year was unique, in that 3 different meetings were planned together, including a new children’s camp for kids with vitiligo, the first educational session for dermatology trainees to learn how to care for vitiligo patients, and then the advocacy meeting for people with vitiligo. It was a huge success!
CAMP VICTORY was exciting, attended by 29 kids plus their parent, with games, a field trip to the children’s museum, swimming, and an intense time for sharing with each other and connecting on an emotional level, guided by licensed psychologists, some of whom have vitiligo themselves. There were giveaways, an indoor Indy speedway (for bicycles), dancing, sports, and more. I peeked in and saw controlled chaos, which is a really good thing for kids’ events – it means they’re having a lot of fun and feel really comfortable with each other and their environment. Many of them shared that they had never seen another with vitiligo, and this ability to meet others was a huge opportunity for them. I was able to interact with many of those who stayed for the advocacy meeting and enjoyed their energy! One little girl won the sneaker style contest at the Sneaker Ball, while another was sleeping at a table (I was empathetic, it was getting late). The event was sponsored by multiple companies, which made it low/no cost for the kids and their families, which I think was really awesome! The director, Dr. Pearl Grimes, vowed this would happen next year and following years at WVD, it was too successful to miss.
The Vitiligo Physician Education Summit (VPES) was also a new addition, which was attended by a number of resident future dermatologists as well as foreign dermatologists who came to hear from the experts about vitiligo diagnosis, management, and the science behind it. My friends Dr. Khaled Ezzedine (from Paris, France) and Dr. Davinder Parsad (from Chandigarh, India) were there to help teach, it was so fun to see them! I gave a couple talks about science and opportunities for new treatments, and I received a lot of great feedback about their excitement for our work. I also sat on a panel with the great Dr. Pearl Grimes to discuss how we use phototherapy to treat our patients. I attended an important session to strategize with dermatologists, patients, pharma, and other stakeholders how to ensure coverage for the new medicines that are being developed. The president of the American Academy of Dermatology, Dr. Seemal Desai, attended and spoke about efforts on a national level to support those who have vitiligo. We discussed how there aren’t enough vitiligo experts in the US currently, or even dermatologists who are fully aware of how to take great care of vitiligo patients, as well as the importance of attracting and training the next generation of dermatologists for this.
The World Vitiligo Day advocacy meeting connected those with vitiligo who wanted to interact with others, strategize efforts to promote acceptance of the disease among the public, learn from the docs, as well as talk about their hopes and concerns living with vitiligo. Lee Thomas, well-known journalist and news anchor from Detroit was there, as well as many leaders of advocacy groups (VStrong, VitFriends, Fearfully and Wonderfully Made, Litty Ligo, others) around the country, and I met the vitiligo actor on the Opzelura commercial that was played during the superbowl. There was a great discussion about building trust between those with vitiligo and the medical/research communities, and I think we all really connected on an important level. I addressed common questions and myths about vitiligo, including skin cancer risks, genetic/family connections, effects of vitiligo on vision, and others. I have blogged about most of these questions, so it was easy! I also had a chance to tell everyone about the VIGOR Study, where we are learning how vitiligo begins. Many came to me afterwards to tell me how excited they were to sign up!
At the Sneaker Ball on Saturday night, they announced the winners of the Incyte Ingenuity Awards, which include one $35,000 award and one $100,000 award to improve community efforts to support those with vitiligo. Sharon King from Litty Ligo in Boston won the first award and will host an event in Boston to promote awareness of vitiligo. My team at UMass Chan won the second award! We will use it to develop advanced educational materials to help everyone all over the world understand what vitiligo is, why they have it, and how treatments work. The team includes Dr. Todd Pearson at UMass Chan, who previously worked in publishing to produce textbooks and electronic materials to teach science, and Dr. Gael McGill, a Harvard Professor who specializes in developing cutting edge educational materials for learners at all levels. We are going to start by working with Valarie Molyneaux at VitFriends to assemble focus groups so we can ask people from the vitiligo community what is most important to them to understand about vitiligo, and how they will best learn – including text, images, videos, and/or interactive programs. Once we have developed these educational tools, we will freely disseminate them to everyone via the web. The best thing about this project is that it will be independent from external influences by drug companies, our own biases, and even preconceived ideas about how to communicate this material. We think this will be quite innovative and impactful, engaging members of the community to hear their needs, and working with world leaders in education to make something really special.
As always, I’m pretty tired now on my trip back home after the World Vitiligo Day spectacular! But it’s a good tired, I loved seeing old friends, making new ones, and feeling like we did something really important over the past few days. The location for next year hasn’t been announced yet but keep an eye out so you can join us there. I guarantee it will be awesome, maybe even better than this year!
