Newsletter December 2016
Great memories of the past year. Happy New Year 2017!
December 29, 2016
With just a few days left of 2016, it’s a perfect time to reflect on what’s happened this year.
There’s been some notable achievements - VR Foundation has become a consultative member of the UN ECOSOC and World Vitiligo Day is now on the UN Calendar of disability events! The U.S. Congress is also re-considering the National Vitiligo Control Act – a bill from 1977 that never made it through Congress but amongst its stated purposes called for ‘the attainment of better methods of control, diagnosis and treatment’ for vitiligo.
Congress undoubtedly took note of the massive rally at the Capitol Hill on June 25th, part of another record-beating World Vitiligo Day that saw huge crowds attend events across the world. Preparations for WVD 2017 are already well underway - the HQ will be in Sao Paulo, Brazil, under the presidency of Professor Paulo Cunha.
Back to 2016: Nature Genetics published a key paper on a breakthrough in vitiligo research led by Prof. Richard Spritz, while the Federal Trade Commission cracked down on predatory publishers that rip off researchers.
Also in 2016, VR Foundation Board of Directors made a historic decision to wind down our scientific programs to focus on policy-making and education. Partly this is because the increasing range and volume of global activities is overwhelming our small non-profit organization.
But its also due to the huge need for more awareness. The figures are stark - a recent publication shows that even in New York City 37% of all patients have to see more than one doctor to get any treatment for vitiligo. Needless to say, in less developed parts of the world the situation is far worse.
So, we brought our Master classes on vitiligo to doctors in Indonesia, Brazil, Russia, India, Kazakhstan, Palestine and Italy. And I’ve written an ebook due for release in 2017 - A No-Nonsense Guide To Vitiligo – that’s a simple yet comprehensive guide to the disease, from causes to treatments and everything in between. Another random chapter from the ebook is here below.
In addition, the power of the internet has been boosting vitiligo awareness during 2016:
VRF Hands on Instagram was a fun and creative way to show vitiligo sufferers they are not alone, while social media went wild for vitiligan model Winnie Harlow, who appeared on Beyonce’s video Lemonade and graced the cover of Marie Claire. Bishop Cooper’s video Just Think About It is worth watching again, while Erika Page’s awesome Living Dappled - a blog ‘for girls, by girls, with vitiligo’ – is a great read.
I would love to personally thank everyone who has helped us, in any way, during 2016, but doing so would turn this newsletter into a book! But I must say a big thank you to Valarie Molyneaux from VITFriends for her incredible efforts in coordinating the World Vitiligo Day rally this year.
Finally, if – like me – you’re thinking about your to-do list for 2017, first have a look at Leonardo Da Vinci’s to-do list, from circa 1490. It’s certainly inspired me – I’m planning something big and new to help the global vitiligo community next year.
Why not take this opportunity to think what you can do to help? If every one of us does something – volunteering, donating, raising awareness etc – then 2017 will be a year to remember!
Today is our end-of-year fundraising deadline. Frankly, we're 1,027 donations short of our goal. Could you donate just $1? This would mean the world to me.
I wish you all the best for the coming year and hope it’s filled with love and happiness. Happy New Year!
CEO VR Foundation
P.S. Here is another random chapter - VITILIGO SCORE - from my upcoming ebook A No-Nonsense Guide To Vitiligo.
I was enjoying the Nutcracker ballet at the Bolshoi Theater in Moscow when my 5-year-old son asked a funny question "Why is that mad man in the orchestra swinging around when nobody is looking at him?”
The mad man in question was the conductor, who was creating an inspiring atmosphere for the audience on that Christmas Eve.
Of course, any decent professional orchestra can play a classic symphony with their eyes shut. But it takes a good conductor to bring in it into sync with the tempo of the prima ballerina on the stage. The conductor also keeps the players’ spirit and energy up during a long and demanding performance.
Treating vitiligo is similar to staging a ballet performance, with its delicate balance of music and action. While you can self-prescribe and self-medicate vitiligo, there’s a high chance you will miss a start, skip a few notes, go at the wrong tempo or even be wildly out of sync with the rest of your body. You need your own conductor - a skin specialist - to keep it all in order.
In order to impress spectators with the flawless tone of your skin, consider medications as notes and your doctor’s prescription as a musical score. They must go exactly as prescribed, without missing a beat.
Certain medications lend themselves easily to personification as instruments. Just like a symphonic orchestra isn’t one without the strings, woodwinds, brass and percussion, vitiligo treatment wouldn’t be complete without a kind of phototherapy, topical creams, internal medications and supplements.
Phototherapy is your principal instrument for the duration of the act, usually slowing tempo down towards the end of performance. Creams and medications play loud at certain points, depending on what’s happening on the stage that is your skin and body. Supplements determine the mood and energy of the act.
A good doctor will intervene like an experienced conductor - exactly when needed. Without speaking too much, your doc can adjust certain instruments so they play a perfect tune together.
I can’t overstate the importance of a vitiligo specialist’s involvement in making the difference between boos and bouquets during your life performance.
I support the petition to designate June 25 as Vitiligo World Day and save millions of people worldwide from social isolation and persecution.
What is coming?
United Nations ECOSOC session
The tenth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities (CRPD) will take place from Tuesday 13 to Thursday ...13 June 2017 10:00, UN Plaza, New York
World Vitiligo Day celebration conference in Detroit, USA
U.S. World Vitiligo Day 2017 Theme: "Step Up for Vitiligo: A Call for Truth, Hope and Change!" Reflecting the mission of the “Step Up for Vitiligo” campaign that came...23 June 2017 18:00, Detroit, Michigan, USA
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