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"Speaking of Vitiligo..."

World Vitiligo Day 2015!

jueves, junio 25, 2015

World Vitiligo Day 2015, BostonToday, June 25th, 2015, is World Vitiligo Day! Note that it is not National, or even International, but WORLD Vitiligo Day. That means even if you live on a yacht sailing in international waters, or on an uncharted, deserted island, this day is for you! Every year this day has had increased participation all over the world, and serves to raise awareness for vitiligo, which is an autoimmune disease of the skin that results in prominently visible white spots. It also sends a clear message to anyone with vitiligo or who has friends or family with vitiligo, that you’re not alone. Vitiligo affects about 1% of the world population, which means that over 70 million people suffer with it worldwide, and whether you are aware of it or not, you know someone with the disease. While there is no cure for vitiligo (read more about why here), there are treatments that help (read about them here), but we desperately need more effective treatments. As a physician-scientist who is committed to finding new treatments for the disease, I spend most of my time in the Vitiligo Clinic and Research Center at UMass Chan Medical School diagnosing and treating patients with vitiligo, and working to find better treatments. To read more about how our work has led to a potential exciting new treatment, click here.

But this post is about World Vitiligo Day, so I am going to tell you how I spent my day. I had the honor and pleasure to stand with our Boston vitiligo support group, VITFriends, on the steps of the State House in Boston talking to passersby about vitiligo to raise awareness of the disease. It was sunny and HOT, but there was a lot of foot traffic during lunch hour, and we educated some and also met new friends with the disease. Then we were invited into the State House to meet with State Representative Gloria L. Fox, who represents the 7th Suffolk District of Massachusetts, and who has served for 28 years in this position. She received the Lifetime Achievement Award from the National Black Caucus of State Legislators for her community activism, is a huge advocate for key issues that affect minority constituents, and has a passion for health disparities. We found her to be a wonderfully gracious host, who listened intently to our concerns about vitiligo. We are excited to consider her the newest member of our team to help develop a plan to change the way people with vitiligo are viewed and treated in Massachusetts, the United States, and around the world.

The event and meeting with Representative Fox was organized by Valarie Molyneaux, the Founder and President of VITFriends, passionate advocate for people with vitiligo, and my good friend. Other key members and supporters of the group were there as well, and Yan Valle, CEO of the Vitiligo Research Foundation, joined us for the event, which was an honor, as much of the concept of World Vitiligo Day and push for world recognition of vitiligo is owed to him. We expect an even larger turnout for next year and many more to come, so please consider joining us in Boston or wherever you live! Put it on your calendar for June 25th, 2016. In fact, make it a recurring event, so you don’t forget for 2017 and beyond. . .