World Vitiligo Day, celebrated on June 25th each year, is a day that recognizes the 1% of those living with vitiligo, an autoimmune disease and condition. Around the world, those with vitiligo and their families and advocates use the day to raise awareness about vitiligo and celebrate their own stories and experiences with the condition.
For those in the USA (and beyond), one of the biggest in-person celebrations of this day was the World Vitiligo Day celebration in Bloomington, Minnesota. The three-day event took place June 24 to June 26th with nearly 200 people with vitiligo, their families, dermatologists and other advocates in attendance.
Focused on supporting those with vitiligo and their families, the program featured empowering and educational sessions designed to provide information and create safe spaces for meaningful conversation. During the weekend, 27 speakers gave updates on groundbreaking research and advocacy work, and shared personal and heartfelt stories of living with vitiligo at what was the first in-person USA World Vitiligo Day event following the global pandemic. Leading dermatologists shared the latest advocacy and treatment updates for vitiligo. Kids and adults shared their inspiring stories about embracing their skin. Children with vitiligo bonded over silly string and rides at the Mall of America. Vitiligo community leaders brainstormed ways to support the community and increase awareness and education for the condition, especially within schools.
Of the 191 attendees, 109 were people living with vitiligo including 30 youth. Speakers, doctors and patients arrived from all over the world, with representatives from the United States, Hungary, Malaysia, Canada and St. Martin. The event was hosted by Minnesota VitFriends, presented by the Global Vitiligo Foundation and sponsored by Incyte Dermatology, Abbvie, Avita Medical, MyVitiligoTeam and Strata Skin Sciences.
Here are the top ten moments of the conference:
#1 Nearly 200 people gathered in Bloomington, Minnesota, to connect and celebrate, sparking life-long friendships and community
What’s better than a selfie? How about a pride-filled photo with nearly 200 of your new best friends. That was the energy behind the moment that conference attendees gathered in the courtyard of the Marriott Minneapolis Airport Hotel for the annual USA World Vitiligo Day picture. On a bright, sunny morning, nearly 200 people gathered close to smile, cheer and take in the emotion of the moment.
#2 Global Vitiligo Foundation President Dr. Amit Pandya shared updates on the organization’s advocacy efforts
The Global Vitiligo Foundation is a non-profit with a mission to improve the quality of life for individuals with vitiligo through education, research, clinical care and community support. The non-profit provides resources for those living with vitiligo as well as dermatologists on their website. Highlighted resources included a Living Well educational video series covering topics from nutrition and lifestyle to support groups and kids with vitiligo, in addition to a global vitiligo events calendar and vitiligo support group directory. Learn more at https://globalvitiligofoundation.org/.
#3 Dr. James Williams talked about leveraging your mindset to live with vitiligo
A motivational speaker, professor and author, Dr. James Williams leveraged inspiration from his personal story of overcoming adversity to talk about how those living with vitiligo can find joy. During his speech, James talked about how changing his mindset through mirror talk, meditation and personal resilience helped him unlock the life that he’s wanted to live. Learn more about Dr. James Williams at https://www.unmaskytp.com.
#4 Leading vitiligo dermatologists and researchers provided medical updates on the most effective and emerging treatments
A treatment series featuring leading dermatologists sharing updates on top treatments for vitiligo included segments on laser and phototherapy from Dr. Mohiba Tareen, topical and systemic therapies from Dr. Amit G. Pandya, surgical options from Dr. Iltefat Hamzavi and new discoveries and breakthroughs from Dr. John Harris. Following the presentations, attendees were invited to join doctors for round-table Q&A about treatments for vitiligo.
#5 Kids celebrated with silly string and a trip to the Mall of America
One of the most important parts of the weekend? Celebrating the kids with vitiligo by giving them a space to share their feelings and have fun with other kids that looked just like them. Throughout the weekend, kids of all ages enjoyed custom programming while making new friends. On Saturday, kids participated in a special session run by vitiligo volunteers who helped them talk about their skin. Each kid left with a gift, including the new vitiligo Barbie, a vitiligo book and a variety of fun grab bag toys. The weekend also included a chaperone-supervised trip to the Mall of America’s Nickelodeon Universe.
#6 Attendees got a sneak peek at the More Than Our Skin documentary
More Than Our Skin is a documentary and outreach project sharing the stories of five extraordinary women living with vitiligo. The film explores the depth of the impact of vitiligo and uncovers the personal and often painful stories of these women to provide a deeper understanding of what it means to live with the condition. During the conference, executive producer Tonia Magras joined several of the women featured in the film for a panel to talk about the importance of raising awareness and the power of this form of storytelling. Learn more at https://www.morethanourskin.org/.
#7 Incyte Dermatology announced the Incyte Ingenuity Awards supporting the vitiligo community
On Saturday evening, Incyte Dermatology announced the Incyte Ingenuity Awards, which aim to foster innovation by funding resources that provide community-driven solutions to address the specific needs of those impacted by vitiligo. The awards will fund two initiatives, awarding up to $35,000 and $100,000, respectively, for projects of different sizes. To learn more and apply, visit https://www.incyteingenuityawards.com/vitiligo/.
Disclaimer: The author of this article (Erika Page) is serving as a judge for the Incyte Ingenuity Awards for Vitiligo and will be compensated for her time.
#8 Teen advocates with vitiligo shared their stories, inspiring standing ovations for their openness and courage
Priyanka Francis, a 17-year old from California, shared her experience getting vitiligo in 2017 and struggling with body image issues and feelings of shame and embarrassment. After learning about VitFriends, a nationwide support group for vitiligo, she attended her first meeting in 2020 and later partnered with the nonprofit to help create Purple Patch Teens, a virtual support group serving teens with vitiligo. Today she’s the author of a book about her life with vitiligo, called Limited or Limitless, and working on a quality of life survey focused on adolescents with vitiligo.
Mallory Hassbit is a 12-year old from Minnesota and the 2020 National American Miss Minnesota Jr. Pre-Teen. During the conference, she shared her speech that was part of her pageant competition that spoke to the experience of living with vitiligo. Together with her mom, she is authoring a children’s book about vitiligo that mirrors her self-love journey and features her dog and best friends.
#9 The conference host was presented with an American flag flown over the U.S. Capitol
The conference was hosted by Alicia Roufs, the Minnesota chapter leader of VITFriends, a nationwide support group for vitiligo patients founded by CEO & President Valarie Molyneaux. As has become tradition during the USA conference, on Saturday night, Alicia was presented with an American flag that had been flown over the U.S. Capitol in Washington, D.C. in recognition of the 2022 World Vitiligo Day Conference and her leadership.
The certificate accompanying the American flag read, “At the request of Congresswoman Betty McCollum this flag was flown over the nation’s Capitol, In honor of Alicia Roufs and Minnesota Vitiligo Awareness for outstanding service in hosting World Vitiligo Day USA 2022 and in recognition of extraordinary perseverance, and selfless dedication to making life better for people with vitiligo, in difficult times. Your innovation for vitiligo awareness, can-do spirit and compassionate leadership are a light to all.”
#10 The 2023 USA World Vitiligo Day celebration location was announced
Save the date! The seventh annual USA celebration of World Vitiligo Day will take place in Atlanta, Georgia, June 23-25, 2023.
Check out our World Vitiligo Day Guide to learn more about the history of this annual celebration. Learn more about the 2022 USA World Vitiligo Day celebration at https://wvdusa.org/. See portions of the 2022 USA World Vitiligo Day presentations via MyVitiligoTeam’s on-demand stream.
The 2022 USA World Vitiligo Day celebration was presented by the Global Vitiligo Foundation and hosted by VitFriends Minnesota. The Global Vitiligo Foundation is a non-profit with a mission to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support. VitFriends is a non-profit network of support groups located throughout the U.S.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.