News - 20 Jun `23World Vitiligo Day – A Brief History

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Could you have imagined that a small gathering aimed to uplift spirits in a Nigerian shopping mall would expand into a global initiative within just a decade? World Vitiligo Day (WVD), observed every 25th of June, has done just that. It's a shining example of how community and shared purpose can fuel powerful transformation. Now, it's a global call to action, advocating for the needs of a hundred million vitiligo sufferers worldwide.

THE GENESIS

Our tale begins in 2009 - a time haunted by the remnants of an economic recession, the advent of Bitcoin, and audiences gaping at the fantastical world of 'Avatar'. Beneath these global milestones, the seeds of the vitiligo awareness movement were quietly being sown.

The prologue to World Vitiligo Day was penned in India. Dr. Savita Malhotra of the Post Graduate Institute of Medical Education and Research (PGIMER) in Chandigarh, initiated the first national "Vitiligo Day". This was celebrated annually on May 19th until 2015 when tireless Prof. Davinder Parsad unified the Indian vitiligo community with the global observance on June 25th.

Across the globe, Steve Hargadon, founder of the Vitiligo Friends support group, voiced an idea of international vitiligo awareness day, but his call echoed in the void. Then, a beacon of hope emerged: Ogo Maduewesi, founder and President of the Vitiligo Support and Awareness Foundation (VITSAF) in Lagos, Nigeria. Ogo organized the ‘Purple Fun Day’ on June 25, 2011, commemorating Michael Jackson and his battle with vitiligo. This initiative aimed to illuminate the truth about vitiligo, debunking myths such as it being a "divine curse". Although the online petition launched by Ogo garnered a mere 111 signatures in six months an no support from other vitiligo groups, Ogo's vision sowed the seeds for a blossoming global movement.

GATHERING MOMENTUM

This seed may have lain dormant, had it not been for Yan Valle, CEO of the Vitiligo Research Foundation (VRF). Recognizing the potential in Ogo's vision, Yan deployed his business acumen to craft a campaign capable of rallying the disparate vitiligo community towards a common goal.

With the backing of the Aksenov Family Foundation, the global WVD campaign launched in early 2012. Initial skepticism quickly transformed into unwavering support, recognizing the campaign’s potential to shift the global health narrative.

June 25th, 2012 marked the birth of World Vitiligo Day, unveiled at a press conference in Rome hosted by Prof. Torello Lotti and Yan Valle. Despite a city-wide transport strike threatening attendance, the message took wing. Events in countries across the globe far exceeded initial expectations, proving that seemingly small actions could birth a tidal wave of awareness and acceptance.

THE GLOBAL ARENA

World Vitiligo Day then embarked on a global journey, with each year shining a spotlight on a new country serving as the campaign's HQ. From Italy to the USA, from India to China, the Czech Republic to Brazil, and now in 2023, Almaty, Kazakhstan - WVD has left an indelible mark across the globe.

Against all odds, WVD quickly emerged as a potent force in global health advocacy, eclipsing similar events five-fold, according to the ever-watchful Google Trends. With the WVD Presidential Committee and VRF at the helm, local vitiligo support groups stage myriad events, while clinics and volunteer doctors offer free skin screenings, consultations, and public education.

The UN petition signatures multiplied exponentially, breaching the half-a-million threshold in 2015. In 2016, the United Nations marked World Vitiligo Day in its International Calendar of Disability Events. However, it was removed in 2019 when the calendar was streamlined to 'Major Events'. Understandably, with the subsequent COVID-19 lockdowns and ongoing global unrest, our appeal has been placed on pause by the officials. Despite this, World Vitiligo Day has surpassed our initial ambitions, influencing public sentiment more effectively than any formal pronouncement could achieve.

OUT OF THE SHADOWS

The journey from WVD's modest origins to its current global stature is a testament to perseverance and unity.

A primary goal of the campaign was to stoke interest in vitiligo within the 'Big Pharma' universe, stimulating drug development for this formerly ‘forgotten disease.' From a meager single company engaged in vitiligo drug development in 2010, the number today stands proudly at over forty. In July 2022, the FDA gave the green light to the first drug aimed at facial vitiligo, followed by the EMA in April 2023, signaling hope for future drug approvals.

In 2022, WVD celebrations ascended to the upper echelons of societal and media establishments. Celebrations were kickstarted at the Senate of Mexico, while governors and mayors across 18 U.S. States declared June 'Vitiligo Awareness Month'. Media coverage has surged, with a host of platforms - from TV channels to radio stations, newspapers, and influential internet personalities - amplifying the WVD message. A Public Service Announcement created by Incyte for the vitiligo community was broadcast across leading TV networks like CNN, Fox News, CBS, MSNBC, and has been viewed an estimated 800M times.

This, dear readers, is the incredible, inspiring journey of World Vitiligo Day - a testament to the power of collective action and the resilience of the human spirit. The curtain falls on this chapter, but rest assured, the story is far from over.

World Vitiligo Day 2011 Nigeria 

Purple Fun Day at the shopping mall in Lagos (Nigeria, 2011)

The first WVD event that was recognized and supported by the government (Vietnam, 2019)

 

The World Vitiligo Day Presidential Committee:

  • Dr. Aliya Kassumkhanova, MD, Founder of Vitiligo Patient School (2023)
  • Prof. Jorge Ocampo Candiani, MD, Chair of the Dermatology Department at Hospital Universitario De Nuevo Leon (2022)
  • Dr. Srie Prihian Gondokaryono, MD, PhD, Head - Indonesian Pediatric Dermatology Study Group (2021)
  • Prof. Ivana Binić, MD, Director of Clinic of Dermatology and Venerology in Niš, Serbia (2020)
  • Prof. Nguyen Van Thuong, MD, Director of Vietnam National Hospital of Dermatology and Venereology, Vietnam (2019)
  • Prof. Paulo Cunha, MD, Chairman of the Department of Dermatology in Jundiaí Medical School, Brazil (2017)
  • Prof. Jana Hercogova, MD, Chairwoman Department of Dermatology Bulowka Hospital, Czech Republic (2016)
  • Prof. Xing-Hua Gao, MD, Chairman of the Dermatology Department at the No. 1 Hospital of China Medical University, China (2015)
  • Prof. Davinder Parsad, MD, Professor at Department of Dermatology PGIMER, India (2014)
  • Prof. Henri Lim, MD, Chairman Department of Dermatology, Henry Ford Hospital, President American Academy of Dermatology, USA (2013)
  • Prof. Torello Lotti, MD, Chairman Department of Dermatology, University G. Marconi of Rome, Italy (2012), Chair of WVD Presidential Committee
  • Ogo Maduewesi, CEO and President of VITSAF, Nigeria - Vitiligo Awareness Day (2011), co-Founder World Vitiligo Day campaign
  • Yan Valle, CEO Vitiligo Research Foundation (USA), co-Founder and General Manager of the World Vitiligo Day campaign.

World Vitiligo Day 2020 Org Committee

Photo: World Vitiligo Day 2020 Org Committee meeting in Madrid

More

For more information about World Vitiligo Day, check out a chache of WVD reports, photos and videos

To register as a volunteer and get the latest updates, please visit 25June.org

 

Read it in Spanish, thanks to Prof. Jorge Luis Perez: Día Mundial del Vitíligo: una breve historia