Open Registration – LRB lobby
Welcome and Group Leaders Introduction
Dr. John E. Harris and Valarie Molyneaux
Dr. Richard Huggins - GVF - Patient Support Group
Jean Marie Meurent - Vitiligo Association of Paris
Alicia Roufs – VITFriends, Minnesota
Diane Tribbitt – Vitiligo Awareness Movement (HVAM), Houston
David Thorn & Angela Coats – V-Strong, Cleveland, Ohio
Denise Blanks – Fearfully and Wonderfully Made – VITFriends, Indiana
Perry Whaley – Vitiligo Men of Action, Atlanta
Tonja Johnson – VITFriends, Florida
Katrina Christian – VITFriends, North Carolina
Breakfast – Albert Sherman Center Cafeteria
Moderator Alicia Roufs
WVD Live broadcast!
Pen Pal Patch – April Sawyer "Shaping Your Child’s Perspective on Their Vitiligo Begins with You"
Dr. Lisa Schuster – “Parenting a Child with Vitiligo”
Dr. Pearl Grimes – “The Enigmas of Childhood Vitiligo”
April Star – “My Beautiful Life with Vitiligo”
Rick Guidotti – “Positive Exposure: The Spirit of Difference”
kids Activities
Research update – Moderator Dr. Harris, Dr. Harris, Dr. Rosmarin, Dr. Huang, Dr. Pandya, Dr. Hamzavi, Dr. Mahmoud, Dr. Elbuluk, Dr. King, Dr. Le Poole, Dr. Birlea, Dr. Manga, Dr. Michael Montgomery (Incyte)
"Ask the Docs" small groups
Lunch
Moderator Valarie Molyneaux
The Honorable Joseph M. Petty, Mayor of the City of Worcester Read Proclamation
Andrea Tan "The Psychosocial Impact of a Social Interaction Skills Training Workshop for Vitiligo Patients"
Four teenagers share stories
Options: volleyball, Green Hill Park Farm, beach, boating, toss balls on quad, ultimate frisbee, Voices of Hope (open mic), posters
Harris lab tour
Volunteer Research (Strassner, Ahmed, Abbas)
Fundraising seminar by Dr. Iltefat Hamzavi (limited to 25 attendees)
(Requires ticket: Advocacy dinner banquet; Magician – Eddie Raymond!)
Cocktails and networking
Moderator Lee Thomas
Ninu Galot - "Fully Exposed"
Lee Thomas - "The Power to Change – The truth about acceptance and what factors implement lasting power to change"
Vicki Tiahrt – GVF "Children, Research, and Hope for the Future – The Patient's Part"
Dr. Hamzavi – GVF "Building a Coalition of Caring: The GVF Doing Its Part"
Wallace Henry from DC – vitiligo legislation "Legislation Update"
karaoke/dancing – Sherman Cafeteria Maxxtone
Breakfast – Sherman Cafeteria
Albert Sherman Center – Moderator Dr. Harris
Meeting Summary – Dr. Harris and Valarie
Ferrell Phelps - "The Skin I'm In"
Yan Valle - "World Vitiligo Day"
Dr. Aliya Kassymkhanova, MD – "Recreating Dead Sea Treatment for Vitiligo in the Clinic"
Break
Alicia Roufs – video - "This is Me"
WVD volunteer research results
Announce next year's location
Buses leave for Logan Airport
Her research focus is on vitiligo repigmentation, approached as a classic example of regenerative medicine. Her team has been developing strategies to characterize the melanocyte stem cells in the hair follicle during NBUVB treatment of human vitiligo.
Dr. Nada Elbuluk is a board-certified dermatologist and assistant professor at the NYU Langone Medical Center’s Ronald O. Perelman Department of Dermatology. Dr. Elbuluk’s clinical and research interests include general and cosmetic dermatology, with a special interest in ethnic skin and pigmentary disorders including vitiligo, melasma, and postinflammatory hyperpigmentation.
Ninu was afflicted with Vitilgo and decided to turn into a fitness model in order to raise awareness for Vitiligo. In the past year Ninu has gained worldwide exposure in ASIA and UK as a champion for raising awareness for Vitiligo and hopes to change the stigma related to people with vitiligo. Ninu is currently writing a book detailing her journey with Vitiligo.
Dr. Pearl Grimes is the Founder and Director of the Vitiligo and Pigmentation Institute of Southern California. She is a pioneer and a leading international authority on vitiligo and pigmentary disorders. Dr. Grimes is a Clinical Professor of Dermatology at the David Geffen School of Medicine, University of California – Los Angeles. She has authored more than 100 professional articles, abstracts and two textbooks.
Dr. Harris is a tenure-track Associate Professor and Vice Chair of Dermatology at the University of Massachusetts Medical School (UMMS). Dr. Harris directs the Vitiligo Clinic and Research Center at UMMS, which incorporates a specialty clinic for the diagnosis and treatment of patients with vitiligo, as well as a vitiligo research laboratory. He uses basic, translational, and clinical research strategies to better understand what causes vitiligo, with a short-term goal of developing more effective treatments, and an ultimate goal of finding a cure for the disease.
Dr. Hamzavi works at Henry Ford Hospital and Hamzavi/Dermatology Specialists. His work on vitiligo includes improving phototherapy options for vitiligo patients, developing surgical treatments, and ways to measure treatment response for vitiligo. He is one of the founders and Co-chair of the Global Vitiligo Foundation, which supports initiatives like the World Vitiligo Day and vitiligo research updates. He is a passionate metro Detroiter, husband, and father of 3.
Victor Huang is the Director of the Vitiligo Clinic at Brigham and Women’s Hospital where he completed a postdoctoral fellowship with Dr. Rachael Clark. Dr. Huang graduated from the UCSF School of Medicine, and completed a Howard Hughes Research Fellowship. He completed his dermatology residency at Washington University in St. Louis.
Dr. Huggins runs a vitiligo clinic at Henry Ford Hospital and speaks at national and international medical conferences about the condition. He is particularly passionate about vitiligo support groups, serving as the medical director for the V Strong group in Detroit and is the chairman of the support group committee of the Global Vitiligo Foundation.
Dr. King is an Associate Professor of Dermatology at the Yale School of Medicine. Dr. King specializes in skin diseases refractory to first-line therapies. He has published extensively regarding the use of Janus kinase inhibitors for the treatment of alopecia areata, vitiligo, atopic dermatitis and other skin disorders.
Caroline Le Poole completed her PhD on the topic of vitiligo 25 years ago in Amsterdam. Research in her lab at Northwestern University in Chicago remains focused on possible causes of autoimmune responses to pigment-producing cells, and opportunities for treatment of vitiligo and related conditions.
Dr. Mahmoud is an Associate Professor of Dermatology at the University of Massachusetts, where he is a member of the Vitiligo Clinic and Research Center. He is performing the Melanocyte-Keratinocyte Transplantation Procedure (MKTP); which has proven to be an effective treatment for patients of vitiligo who do not respond to other therapeutic options.
Valarie Molyneaux is the Founder and Chief Executive Officer of VITFriends, a National Vitiligo Support Community. She is a UMass-Boston Graduate, wife, mother, Educator (K), Published Author, Vitiligo Patient Advocate, GVF Committee Member, NIAMS (NIH) Coalition Member, VRF Advisory Member, Minister, Women's Prayer Group Leader and Community Activist.
Amit Pandya, M.D., is a Professor in the Department of Dermatology at UT Southwestern. He holds the Dr. J.B. Shelmire Professorship in Dermatology. He is an expert in treating vitiligo, a disease in which the skin loses color; post-inflammatory hyperpigmentation, usually caused by acne in darker-skinned individuals; and melasma, which causes brown patches on the face.
A native of Houston, Texas, Mr. Phelps is a celebrity photographer whose clients include Shaquile O'Neal, Dionne Warwick, Beyonce Knowles, and Destiny’s Child. In addition to other projects, he is currently producing "The Skin I'm In", an exhibition and coffee-table book designed to address the prejudices evoked by skin conditions, including vitiligo.
Dr. Rosmarin is a clinical scientist at Tufts Medical Center focusing on clinical trials for inflammatory disorders of the skin. He was the PI for an investigator initiated trial for the use of an oral JAK inhibitor for vitiligo, which led him to become the PI for a multicentered trial evaluating topical ruxolitinib in vitiligo.
Dr. Lisa Schuster is a pediatric psychologist who has vitiligo herself and works at Children’s Medical Center in Dallas, Texas. In this role, she assesses over 400 children each year for difficulties in social-emotional or behavioral functioning and evaluates safety, adjustment, and psychosocial risk factors. Dr. Schuster is also an assistant professor in the Department of Psychiatry at the UT Southwestern Medical Center.
April Sawyer is the creator of Pen Pal Patch and the Children’s Division Director of Vitfriends. She is an Advocate to parents who have children with Vitiligo. She has matched almost 100 children with with pen pals. She is a mother of Aliya Sawyer who is 7 with Vitiligo. April is passionate about Vitiligo Awareness, has a love for math, and works as an accountant.
Child print and runway model who attracted interest for her vitiligo, a skin condition that causes the loss of color in random patches. She has worked with the online boutique Love My Alannah and Essence magazine. In 2017, she became a face for Gap Kids.
Vicki Tiahrt serves as Patient CoChair on the Board of Directors of the Global Vitiligo Foundation. She has had vitiligo for 35 years and knows first hand the benefits of patient support groups. Vicki is passionate about advocacy and has led patient lobbying efforts at the United States Congress.
Lee Thomas is a Detroit Michigan news and entertainment reporter at Fox-2 and motivational speaker. Lee has won four Emmy Awards and an Associated Press Award. Lee was diagnosed with vitiligo and his memoir “Turning White (2007)” continues to attract lots of attention. Lee started the Detroit Vitiligo Support Group, V-Strong – vitiligostrong.com.
Yan Valle is a Chief Executive Officer of non-profit Vitiligo Research Foundation, consultant and writer. As a patient since around six years of age, he has gone through every common pitfall known to person diagnosed with vitiligo. As a professional, Yan went from three decades in high-tech and business development sector to become a vitiligo specialist.
In 2018, the 3rd celebration of World Vitiligo Day will be will be held at UMass Medical School in Worcester, MA on June 22nd-24th, 2018, and hosted by Dr. John Harris, the Director of the Vitiligo Clinic and Research Center at UMass Medical School, and Valarie Molyneaux, the President and Founder of the VITFriends support group based in Boston, MA.
The title for the event is “Children, Research, and Hope for the Future”, and will feature a session focused on children with vitiligo together with another session with vitiligo experts talking about their own research to improve the lives of patients with vitiligo. There will be plenty of time for all to socialize and get to know each other.
We expect WVD 2018 will attract hundreds of vitiligo patients, their family and friends, as well as dermatologists with expertise in vitiligo research and clinical care. The event will be a wonderful opportunity for attendees to interact in a relaxed atmosphere, and hear about existing treatment options as well as exciting new treatments on the horizon.
Our goal is to sound the alarm that: 1) Vitiligo is a skin disease worthy of attention. 2) Funding for research into the cause and cure of vitiligo is sorely needed. 3) Adequate coverage of proven treatments for vitiligo is a right for patients. 4) Federal and local support for patient advocacy is needed. Next year’s theme is to communicate hope for the future by highlighting our youngest who have been afflicted with vitiligo, as well as recent research that is bringing a wealth of new treatments just on the horizon. Our goal is to end the bullying, social isolation, and suffering of vitiligo patients. And we can do it.
Worcester, known as the “Heart of the Commonwealth” due to its location in central Massachusetts, offers visitors historical and recreational experiences that are well worth the visit. Far from simply a sleepy suburb 40 miles east of Boston, Worcester is the second-largest city in New England and was host to political landmark events such as the first public reading of the Declaration of Independence in the state (1776), Shays’ Rebellion (1786-7), and the first women’s rights convention (1850).
An industrial leader in household goods like textiles and envelopes, Worcester also boasts Elm Park, the first public park in the country, and idyllic Lake Quinsigamond, where local colleges assemble to compete in rowing. Worcester was the birthplace of the “smiley face” and the birth control pill, and is now home to major biotechnology, research, healthcare, and higher education, including 9 separate colleges and universities.
For more about the history of Worcester, click here.
Thank you for your interest in our upcoming conference. There are a few ways that you can help us spread the word and make this event successful: