Excitement is Building - World Vitiligo Day 2016!
I am sitting on the plane to Washington DC, preparing to attend the first World Vitiligo Day rally. The idea for this rally was hatched at a VITFriends conference last year in Boston, and is supported by vitiligo patient groups from all over the country. Many are scheduled to attend, including patients, physician experts, researchers, and others who support the cause. Many of us have scheduled meetings with our Senators and Representatives to educate them about vitiligo, its importance to their constituents, and how to best support our effort to improve care for patients (see the picture of some of our team at left). During the rally we will listen to each others’ stories, hear from doctors who take care of vitiligo patients, learn about new research, and experience “vitiligo and the arts” through vocal performances and a fashion show. Excitement is building!
Vitiligo awareness has come a long way in the past few years, with the news and discussion around Michael Jackon’s untimely death, appearance of Winnie Harlow on America’s Next Top Model, April Star, a beautiful young vitiligo model who is following in her footsteps, the now-famous Facebook user who got the tattoo “It’s called vitiligo” to explain her condition to gawkers, the award-winning video called Vitiligo: Hope, Truth and Change, two studies reporting the effectiveness of Xeljanz and Jakafi in two patients with vitiligo, and ongoing research that is leading to a better understanding of what causes vitiligo, which is also attracting the attention of pharmaceutical companies who see a real opportunity in developing new treatments for it. My phone feels like it’s ringing off the hook with companies who are interested in learning more about vitiligo and who are eager to tell me some of the drugs they have that they think will help. EXCITEMENT is building!
The Vitiligo Working Group (VWG), an organization started by vitiligo expert physicians and researchers (including yours truly), is working hard to bring vitiligo awareness to the world and to improve patient care of vitiligo patients. It’s a powerful group, with very motivated members who stay up late and sacrifice personal interests for this effort. I know, because they’re my friends and I’m getting emails from them in the middle of the night as we work to write papers, resolve controversies, and plan meetings. The VWG also sponsored the video mentioned above, supports patient groups and clinical/research meetings, and launched a social media campaign titled, #StepUp4Vitiligo. Please take a minute to check out their Facebook page, where they are posting the latest and greatest vitiligo updates, and even hosted a live Facebook chat with vitiligo experts to answer questions from all over the world. I was the guest on Wednesday, and 5 others joined this week – you can still see the thread with questions and answers on their page. Lots of great questions and comments, many about the exciting future for vitiligo. I frequently hear vitiligo experts saying what an exciting time this is to be helping vitiligo patients. And I agree completely. EXCITEMENT IS BUILDING!
