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World Vitiligo Day 2019

Posted On: Monday, June 24, 2019 Posted By: John E. Harris Tags: Vitiligo

WVD2019 photo.jpg

World Vitiligo Day 2019 again saw over 300 attendees participate in the program, this time descending on Houston, Texas to celebrate together. Last year we and VitFriends Boston hosted the program at UMass Medical School, and we had a blast! You can read more about World Vitiligo Day 2018 here. This year it was HOT, as only Texas can be, however the weather didn’t dampen our enthusiasm for spending quality time with each other, as in previous years. The events were well-planned, beginning with a mix-and-mingle on Friday night as we were all arriving at the hotel. Groups from around the country and even the world (one attendee was from London, another from Serbia) were introduced, and many modeled their best Texas styles on the runway of the stage. It was a lot of fun as we remembered why we assembled together for the event to renew old friendships, encourage one another, and just have fun! 

The next morning launched the more formal program, starting bright and early with breakfast and coffee. The morning and early afternoon found vitiligo specialists and other doctors (including yours truly) updating everyone about treatments, research, and mechanisms to cope with disease as well as help others along their journey. Dr. Pandya (Dallas) talked about current treatments for vitiligo, Dr. Grimes (LA) related coping mechanisms, Dr. Bree (Houston) about the wellbeing of children with vitiligo, and Dr. Schuster (Dallas) the impact of vitiligo on how patients think and act in the context of their condition.

I was asked to talk about new research in vitiligo and was able to discuss clinical trial results that we just announced last week at the World Congress of Dermatology in Milan, Italy! Lee Thomas from Fox TV interviewed me about these results, which you can watch below.

 

The trial tested a new topical treatment for vitiligo (a JAK inhibitor, read more in my blog Cutting-Edge Developments in Vitiligo), and the results were really exciting! Subjects who used the drug saw significant improvement in their skin, while the group using the placebo cream did not get improvement. We presented only the first 6 months of the trial, and we expect even better results from 1 and 2 years of treatment when they’re released. I also discussed how my new company, Villaris Therapeutics, is working to develop a long-lasting treatment for vitiligo.

The afternoon ended with a panel of individuals with vitiligo talking about their journey and how they live with having vitiligo. At night, we enjoyed dinner, music, and dancing as is our custom! The celebration was in a 70s theme, and the fashion display did not disappoint, with bell bottom pants, flashy shirts, and a bunch of afro hair-dos! We became loud, disturbing the neighboring party next door, and did our best to control our enthusiasm so they could hear themselves think. In fact, one or two of the guests from the party in the other room came and joined us on the dance floor! The night went late, as attendees were hesitant to turn in and declare the end of such an outstanding day. 

The final morning on Sunday again started with breakfast, but then included an optional faith-based service with a heartfelt message and singing together. Following this, the first talk of the session was Rick Guidotti from Positive Exposure in New York, who discussed his work in redefining beauty by taking photographs of those with a number of skin and other conditions. Rick attended WVD2019 last year and was a huge hit with the crowd, taking “fashion-style” photographs of anyone who would take a few minutes out of their day to pose. He is a true professional and instilled a sense of excitement and pride in those who have vitiligo. In fact, I even had a few pictures taken, and for a moment felt like I was a celebrity! He talked about a brand-new gallery that he is opening in NYC this fall and invited everyone to come and visit.

Then each of the doctors sat at different tables around the room and took questions from attendees who were interested in asking them. I had a full table of people with great questions, and the time seemed to fly by. Before we knew it, Lee Thomas was telling us our time was up as we next celebrated the organizers for this outstanding meeting, and also announced next year’s WVD host! We will travel to Minneapolis, Minnesota on June 26-28th in 2020 for the 5th annual celebration. Alicia Roufs from VitFriends Minnesota will be our co-host, and we’re excited to see what’s in store. Every year has been bigger and better, and Alicia is a force to be reckoned with. The Global Vitiligo Foundation will partner with Alicia to host the event, and we’re expecting big things, if for no other reason than we have a LOT of fun when we get together. Join us next year, I guarantee you won’t regret it!

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