Happy World Vitiligo Day! I am celebrating at home while I recover from the World Vitiligo Day Conference 2018, which we hosted this year at UMass Chan Medical School in Worcester, MA. It was such a great time, as we reconnected with old friends and made a bunch of new ones. We at the UMass Vitiligo Clinic and Research Center co-chaired the meeting with Valarie Molyneaux, the president and CEO of VITFriends, a community of individuals with vitiligo that started in Boston but is now working with groups all over the country and world.
We started off the weekend preparing the materials and rooms on Friday afternoon with a number of volunteers from the medical school, my lab, and attendees who arrived a little early (thanks Kim Boyd, Denise Blanks, and Barbara Hamilton). While we were setting up, a local TV news station from Worcester came and talked to us about the event, you can watch that interview here. We opened registration at 6pm, and the line wrapped around the lobby as attendees waited to get their materials but didn’t mind because they were excited and all connecting with each other. We had 314 people registered for the event, almost doubling last year’s number. Of those, 27 were children, 13 sponsors, 28 volunteers, and 23 speakers. Attendees came from all over the US, but also 6 other countries around the world, including Canada, Brazil, Kazakhstan, Guadeloupe, Australia, and France.
After registration, Valarie and I welcomed everyone, and Dr. Richard Huggins from Henry Ford Hospital in Detroit spoke to us on behalf of the Global Vitiligo Foundation (GVF) about the importance of working together all over the world to drive advocacy for vitiligo. Vitiligo support communities are springing up everywhere and remaining connected and speaking with one voice will be critical to raise awareness, get medical coverage, and research funding for vitiligo. Next, we had 8 support group leaders from around the US, as well as Jean-Marie Meurant from Paris, speak about the work they are doing with their groups for vitiligo. Afterward, attendees went back to their hotels to rest up, excited for the rest of the weekend.
We started bright and early Saturday morning with breakfast at 7am, followed by a live videoconference with vitiligo experts around the world, including Morocco, China, South Africa, and India! I can’t believe our audiovisual team was able to pull this off, but it was awesome. Next, we had our session dedicated to children, which started with April Sawyer telling us about Pen Pal Patch, a group that connects children with vitiligo around the world and encourages them to write to each other as pen pals about their struggles and victories with vitiligo. She told us about her own strategy to help her daughter live with vitiligo and interact with her peers.
Next, we heard from Dr. Lisa Schuster, a child psychologist from Dallas who has vitiligo, about how to parent a child with vitiligo. Dr. Pearl Grimes from the Vitiligo and Pigmentation Institute of Southern California talked about how to take care of children with vitiligo from the doctor’s perspective. She did this through stories of her patients, who start being unwilling to smile, but then learn as their skin gets better with treatment, and then they shower her with drawings and other accolades – one of them lovingly just calls her “Grimes”. Next was April Star, a child model with vitiligo, who gave us an insider’s tour through her childhood with vitiligo. You can read about some of that here. We ended with an incredibly inspiring presentation by Rick Guidotti, a former fashion photographer and now founder and director of Positive Exposure, an organization that has worked to promote a more inclusive and compassionate world where ALL differences are understood and celebrated. You can read more about his organization here. After this session the kids had a great time with April Sawyer doing crafts and playing together.
After a very brief coffee break (who can spare the time for breaks when we had such great speakers!), we heard from vitiligo researchers from all over the country who are working on developing better treatments for the disease. These speakers included me, as well as Dr. David Rosmarin (Tufts), Dr. Victor Huang (Harvard but moving to UC Davis), Dr. Amit Pandya (UTSW), Dr. Iltefat Hamzavi (Henry Ford Hospital), Dr. Bassel Mahmoud (my colleague at UMass), Dr. Nada Elbuluk (USC), Dr. Brett King (Yale), Dr. Caroline Le Poole (Northwestern), Dr. Stanca Birlea (UColorado), Dr. Prashiela Manga (NYU), and Dr. Michael Montgomery (Incyte). We heard about the exciting research that these dedicated investigators are conducting in their clinics and labs, as well as the ongoing clinical trial sponsored by Incyte, the first trial for vitiligo to target the immune system in decades. After this session the speakers sat around small tables to answer questions from attendees while lunch was prepared.
Over lunch we heard from the Honorable Joseph Petty, Mayor of Worcester, who read his proclamation declaring June Vitiligo Awareness Month and June 25th World Vitiligo Day for the City, as well as one from Senator Elizabeth Warren recognizing our event. Then we heard from Andrea Tan and Dr. Schuster from Dallas about a training workshop they developed for vitiligo patients to learn how to cope with having vitiligo. We ended lunch with 4 brief stories from teenagers with vitiligo. One talked about her struggle playing basketball in school when players from the opposing team refused to guard her on the court.
After lunch was scheduled free time for attendees to spend time together through a number of optional social activities. They took a tour of my research lab, played volleyball and frisbee, watched World Cup Soccer, volunteered to donate skin and blood for our research (we announced the results the next morning!), learned about fundraising from Dr. Hamzavi, looked at posters describing a number of ongoing research projects from our group, and some just went back to their rooms to rest. It was a little rainy, but that didn’t dampen anyone’s enthusiasm!
Our dinner banquet was dedicated to vitiligo advocacy and raising awareness for vitiligo. Lee Thomas, author and Emmy Award-winning entertainment reporter for Fox News Detroit (read about him here), moderated the banquet with his usual poise. He introduced Ninu Galot, entrepreneur/fitness model/vitiligo spokesperson from London (read about her here), who inspired us with her story of having vitiligo, which started with shame and embarrassment, but ended with confidence and success, now resulting in her work to raise vitiligo awareness for both her and her young nephew who was recently diagnosed with the disease. Vicki Tiahrt and Dr. Hamzavi spoke about their work on behalf of the Global Vitiligo Foundation (GVF) to create an umbrella organization that can tie in physicians, researchers, patients, their friends/family/caregivers, pharmaceutical companies, and regulatory agencies to move the bar and support the development of treatments for this disease. Dr. Wallace Henry, III, an individual with vitiligo form Washington DC, spoke about his advocacy efforts on Capitol Hill, as he works tirelessly on behalf of vitiligo patients and the doctors and researchers who are working for a cure. I have to admit that my favorite part of the evening (apart from spending a little needed time with my family during dinner), were gifts to Valarie and me from Vicki Tiahrt, the GVF, and Congressman Jim McGovern, which were two US Flags that were flown over the Capitol building in Washington DC in honor of our work for World Vitiligo Day. I can’t wait to put mine up on my office wall as a reminder of what we’re working so hard to do.
After the banquet, we all partied singing karaoke and dancing together until midnight. Maxxtone was our live band, and they were awesome. I’m sure you can find any number of videos showing us having a blast on stage as we sang our favorite songs together. I particularly liked “Brick House” by V-Strong Detroit, with Dr. Richard Huggins up front singing and dancing like a rock star. Four vitiligo docs, including Dr. Pandya, Dr. Elbuluk, Dr. Grimes, and I, also sang “Play that funky music white boy”, and I didn’t realize until later that I was the token “white boy” on stage. I even had a chance to lead off the night singing “Lucky” with my daughter Abby, which was a special treat. We went away tired but had so much fun! Who knew that having or studying vitiligo went along with loving karaoke!
Finally, Sunday morning came and we prepared to say our goodbyes to each other. But first, we heard from Ferrell Phelps, celebrity photographer, writer, and talk show host from Houston (read about him here), who spoke about his work producing the “The Skin I’m In”, his journey to become an accomplished photographer, and his inspiration from individuals with vitiligo. Next, we heard from Yan Valle, vitiligo sufferer, CEO of the Vitiligo Research Foundation, and co-founder of World Vitiligo Day, about his tireless efforts to raise awareness and educate doctors about proper care of patients with vitiligo. Next was Dr. Aliya Kassymkhanova from Kazakhstan, who talked about using salt baths with phototherapy to recreate the Dead Sea treatment experience for vitiligo patients in her office. After a quick break Alicia Roufs showed her video “This is Me”, with pictures of attendees at the conference.
I then presented the results of research we did on volunteers from Saturday who let us sample their skin. Thanks to Dr. Maggi Ahmed and MD/PhD student James Strassner for staying up all night to get the results in time for me to present on Sunday morning! FINALLY, we ended the conference announcing the location of next year’s 2019 World Vitiligo Day Conference – Houston, Texas, hosted by Diane Wilkes-Tribitt of the Houston Vitiligo Awareness Movement (HVAM) and the Global Vitiligo Foundation!!! We all said our goodbyes, and many jumped on the bus to Logan Airport to fly back home and reflect on this wonderful experience, as I’m doing right now. I am thankful for everyone who came to make this such an incredible experience that I will never forget.
In addition to my co-Chair of the event Valarie, I MUST thank Terry Balzano, my administrator and muscle behind the UMass Vitiligo Clinic and Research Center, as well as Masha Zabaruk, David Anavim, Stan Prodanov, and Scott Dziewietin, Ziyad Habib and Amy Devlin the brains behind the audiovisual needs of the conference, and so much more. They designed the website, materials, logo, T shirts, program, gift bags, etc., as well as brilliantly executed the audiovisual needs, live webstream, and videoconferencing around the world. You can watch the event here if you weren’t able to attend, or if you just want to see it again! A special thanks goes to Mark Skalny for taking amazing pictures and being able to capture feelings of vitiligo community. I must also thank our UMass facilities staff, security, and all of the volunteers who helped during the event, including medical students, members of my lab, and my own family (especially Abby and Melissa)! The generous sponsors of the conference made it possible to do all that we did for a low registration fee, and they socialized with the attendees and learned how to better serve the community as they work hard to develop new treatments for the disease. Alright, that’s enough for now – digest it all, and please consider joining us next year, 2019, in Houston!
