Top 10 Moments of the 2024 USA World Vitiligo Day Celebration
World Vitiligo Day is celebrated each year on June 25, a day to recognize the 1% of the world’s population living with vitiligo. The day is marked by celebrations and observations worldwide to raise awareness about the condition and honor the experiences of individuals who live with vitiligo.
This year, the U.S. vitiligo community converged on Indianapolis, Indiana, for a three-day event presented by the Global Vitiligo Foundation (GVF) and hosted by local support group Fearfully and Wonderfully Made Indianapolis Vitiligo Community. The annual conference took place June 21st to June 23rd, with more than 189 attendees including people with vitiligo, their families, dermatologists and other advocates in attendance. Attendees represented the United States, Canada, Congo, Jamaica and South Korea.
Focused on celebrating the diverse paths those living with vitiligo can follow, and empowering attendees to forge their own unique journey, the 2024 conference theme was “Boots on the Ground—Finding Your Pathway.” During the weekend, speakers shared updates on the latest research and advocacy efforts as well as personal stories about living with vitiligo.
Here are the top ten moments of the conference:
#1 An exciting announcement from the GVF
As the advocacy organization behind the weekend’s event, The Global Vitiligo Foundation kicked off the weekend with updates from the GVF president, Dr. Pearl Grimes, about their recent work in the vitiligo community including dermatology training and meetings and an open invitation to patients to attend GVF meetings. Additionally, the GVF announced a new initiative—a virtual, international support group to help drive unified support and education for those living with vitiligo across the globe. Details to come. (We’re keeping an eye out for you!)
#2 A celebratory welcome and ‘Casino Royale’ night
On Friday evening attendees put on their poker faces for a “Casino Royale” night. Playing with “funny money” for prizes, the room was buzzing with laughter and fun.
#3 An empowering mental health workshop
Founder of the Florida-based vitiligo support group Beautifully Unblemished, Tonja Johnson led a powerful workshop on the psychological impact of vitiligo. Diagnosed in 2014, she quickly lost 85% of her skin’s pigment and started seeing a therapist as she dealt with loss of confidence, suicidal thoughts and loss of control. Today she still struggles and advocates for mental health support for those living with vitiligo as a result. The powerful workshop shared some of the science of grief and psychological thinking, and ended with an exercise where attendees wrote a letter to their vitiligo.
#4 A celebratory group photo
The best part of the weekend? Hands down, the people. And you can see many of them photographed here.
#5 A call for diversity in research
Sharon King, founder of Litty Ligo, shared her perspective on the importance of participation in research as a way to share your voice, and reinforced the need for diversity in research. She specifically welcomed the “self-love community,” those who have embraced their skin and are not seeking treatment, to leverage research as a way to share their voice and be part of the conversation about vitiligo. Sharon’s hope is to see not just “patients’ represented in research, but those living with vitiligo but not seeking treatment too.
#6 A Q&A with leading dermatologists for vitiligo
What new things are we seeing for treatment of vitiligo? Can hair regiment? What studies are being done? These were just a few of the questions fielded by leading vitiligo experts Dr. Pearl Grimes, Dr. John Harris, Dr. Iltefat Hamzavi and Dr. David Rosmarin. No matter the question, these dermatologists had an answer and were eager to help the audience get the answers they needed.
#7 An Instagram-worthy step-and-repeat
Throughout the weekend, attendees stopped by the WVD step-and-repeat to commemorate the weekend, capture moments with new and old friends alike, and show off their vitiligo pride.
#8 Announcement of the 2023 Incyte Ingenuity Award recipients
The Incyte Ingenuity Awards (IIA) in Vitiligo™ fund thoughtful, creative and original programs and resources that address specific needs of people with vitiligo. During the World Vitiligo Day weekend, Incyte announced the 2023 recipients—UMass Chan Medical School, Department of Dermatology and the Litty Ligo Vitiligo Community Network—and announced a new awards program, the Vitiligo Innovators Program™ (VIP). (Learn more about each of these programs here.)
#9 A DJ-hosted sneaker ball
Ballgowns welcome, sneakers required. On Saturday evening, the community celebrated the weekend with a sneaker ball, complete with DJ and dancing.
#10 Testimonies from kids with vitiligo
The best part? Watching our teens with vitiligo share their experience at a recent Teen Leadership Summit hosted by Litty Ligo. The summit created a safe space to talk about adversity, dealing with conflict and what makes a good leader. And according to these teens, it was a resounding success—giving them a space to talk freely and find their voices.
