News - 24 Jun `20A Living History of the World Vitiligo Day

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As the world grapples with a global pandemic, World Vitiligo Day has moved online. So, there’s a different vibe for June 25th this year – but it will be no less memorable or important.

In this short video posted here below, Yan Valle -  CEO VRF and campaign's vigilant manager - zips through 10 years of the campaign and looks into the future.

 

~ VIDEO TRANSCRIPT ~


World Vitiligo Day is here again! A bit different this time, but still a day when we look into the future and remember the past. 
 
So, for a moment let’s roll back the years to 2010 – one year before the first World Vitiligo Day.
 
In those days, vitiligo was a “neglected disease” – one of many. There were few books on the subject, no celebrities talking about vitiligo on TV, and little on the web.
 
Difficult times, especially as vitiligo isn’t an easy thing to explain. Yet, especially if your skin is dark, you sometimes have no choice but to try.
 
Back then, a common dialogue with a stranger may have gone something like this:
 
 
What’s THAT?!
 
– It’s my skin. The patches are due to a condition called vitiligo
 
Is it contagious?
 
– No!
 
It must be a CURSE from the GODS!
 
-- No, I don’t think so.
 
 
Back in 2010, even doctors don’t know much about vitiligo. All treatments are off-label -- designed for other diseases, like psoriasis. They work for some, but not for others, and it’s hard to understand why. 
 
For Big Pharma, vitiligo is not a priority. It’s not a rare disease – which means no support from the government. And it’s not covered by insurance - which means no reimbursements.
 
And it’s not even clear what the disease is -- which means years of research in the lab are needed.
 
But few researchers study vitiligo. It’s hard to make progress without proper funding. And it would take years to test just one idea -- out of hundreds of possibilities.
 
What’s more, epidemiologists can’t even agree on the global number of vitiligo patients. Their numbers are based on projections from other studies. Some say it affects 0.1% of the population. Others say it’s anything up to 8%. So, is it ten, fifty or one hundred million people? Nobody knows.
 
That’s how the vitiligo landscape looked just ten years ago.
 
Now, fast forward to the present day.
 
World Vitiligo Day just keeps getting bigger. Dozens of city mayors -- and even several US state governors – have declared June as vitiligo month.
 
Doctors manage vitiligo much better today. There are dozens of experimental and off-label drugs available, as well as lasers at the clinic and phototherapy at home.
 
Two dozen biotech companies are working on vitiligo therapies. Over fifty clinical trials are in progress. And hundreds of researchers are digging deep.
 
So, how did that happen? And in such a short space of time?
 
I believe it all started to change in 2011, when Ogo Maduewesi and a handful of VITSAF members organized the Purple Fun Day. It was held at the shopping mall on Victoria Island in Lagos, Nigeria on June 25th. The event was dedicated to Michael Jackson. The King of Pop bleached his skin because of vitiligo, but nobody believed him at the time. Sadly, he passed away on June 25th, 2009.
 
Ogo collected 111 signatures that summer to support international recognition of vitiligo. She couldn’t have dreamt that, within just a few years, that sum would grow into half a million.
 
In early 2012, Vitiligo Research Foundation and VITSAF decided to create the global campaign that’s now known as World Vitiligo Day. Our goal was for the United Nations and ministries of health worldwide to officially recognize the event. But we got much more than that!
 
The first World Vitiligo Day was held at Rome University, under the presidency of Professor Torello Lotti, on June 22nd, 2012.
 
It wasn’t easy. At the time, vitiligo support groups were weak and disconnected. The United Nations couldn’t care less about our campaign. And there was no funding. On top of that, Rome was completely paralyzed by a union strike – so no journalists could arrive on time.
 
Nevertheless, the first World Vitiligo Day was celebrated for four full days -- all over the world.  It was a huge success!
 
We decided that the campaign HQ should move from one city to another, to help both participation and media coverage to grow.
 
Onto 2013. Around fifty patients and staff gathered to celebrate the second World Vitiligo Day at Henry Ford Hospital in Detroit. Lee Thomas – who needs no introduction – invited us onto the morning show on Fox TV. By the end of the year, we had 130 thousand online signatures.
 
2014. The campaign moved to Chandigarh, India. I always wanted to ask Professor Davinder Parsad, what kind of ancient magic he used to make this beautiful event possible - against all the odds! 800 doctors and 250 patients attended the conference. And World Vitiligo Day celebrations took place all over the happiest city in India.
 
2015. The campaign crossed the Himalayas to Shenyang, China, under the presidency of Professor Xing-Hua Gao. Thousands of patients received consultations at 30 hospitals across China. Activists collected 12,000 petition signatures in just three days, and the total number of signatures grew to half a million.
 
My time is tight, so I’ll zip through the next years of the campaign.
 
2016 was marked by over 300 people marching across Washington DC to Capitol Hill.  The rally was organized by VITFRIENDS from Boston, who deserve huge thanks for their support of every World Vitiligo Day activity.
 
Year 2017: Professor Paulo Cunha and his brilliant team managed the World Vitiligo Day in Brazil, which reached from downtown Sao Paulo to the Amazon jungle. Some tribes had a first visit by a dermatologist in many years!
 
2018: University of Massachusetts Medical School -- the home of an outstanding Vitiligo Clinic and Research Center -- played host, under the command of Professor John Harris. 
 
Year 2019: A week-long event started in Sugar Land, Texas. Then, it rolled across many countries to Hanoi, Vietnam -- supported by dozens of hospitals and clinics. All under the presidency of Professor Nguyen Van Thuong.
 
And now we are at 2020. We were supposed to be in Serbia with Professor Ivana Binic this year. Sadly, coronavirus has changed our plans -- but not our commitment to World Vitiligo Day.
 
Yet, still we gather – albeit virtually – and still we talk and learn.
 
So, I will let others now speak – to tell us what’s true and what’s not, and about new drugs and new hopes for us all.
 
Thank you for being here with us today!
 
 
Yan Valle
 
Transcript for WVD 2020.mov

 

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