More Than Our Skin

This is a request by Hull Bay Productions for a production grant to support an ambitious multi-platform project on the auto-immune disease Vitiligo. The film, More Than Our Skin is the centerpiece of this project and will be a two-hour film presentation produced by award-winning producer/director partners Gregory and Tonia Magras and co-produced by multi-award-winning documentarian Calvin A. Lindsay, Jr. of Centurion Filmworks.

We live in a society where beauty is determined by how we look.  The prevalence of beauty products, fashion magazines and films impose their standards upon us daily, reinforcing the misconception that beauty is only skin deep.  We only have to look in the mirror to know, the only person who can define beauty for us is the one being reflected, not the one spread on the cover of a magazine. Shouldn’t those living with the effects of Vitiligo be afforded the same consideration?

More Than Our Skin is a documentary exploring the depths and effects of living with Vitiligo. Vitiligo is an auto-immune disease in which the skin loses its pigment cells resulting in discolored patches throughout the body. People with the condition not only experience high levels of depression, but also suffer from social stigmatization and isolation. The result, oftentimes, manifests as shame, avoidance of intimacy, and in far too many cases – suicidal ideation.

More Than Our Skin will show and tell the stories of those privately suffering in this very public silence as they try to hide in plain sight. We’ll look at how society’s notions of beauty and belonging have conspired to erase the more than 70 million people around the globe who suffer in silence. The irony and beauty of the film project is that More Than Our Skin will give face to those whose face has been the source of so much pain and discomfort.

The Hull Bay Productions creative team has partnered with several Vitiligo support and advocacy groups to bring this project to fruition, and has secured an ever-expanding, diverse cast of people who are willing to tell their stories, many for the first time, as they make positive steps to bring understanding, inclusivity, and awareness to this widely misunderstood disease.  

The More Than Our Skin project will also include an interactive website, on which the documentary will be made available as streaming video; and extended series of vodcasts featuring members of the Vitiligo community; a series of discussions including experts in the field and a library of blogs and submissions to help spread information for those living with Vitiligo.

All the project components have been carefully coordinated and scheduled to be released on during World Vitiligo Month in June 2022.

Because of the project’s broad reach and scope, and its promise of brining important attention and advocacy to a larger audience in never-before way, we seek a grant in the amount of $350,000, or a portion thereof.

CONTENT AND CREATIVE APPROACH

This film is designed to incorporate four key elements in telling this important story. Here are the sectionsbelow:

The Stories

The film, More Than Our Skin is a two-hour documentary exploring in depth the effects of living with Vitiligo - through the stories of those who live it.

Through these personal and often painful stories of five women, More Than Our Skin provides a deeper understanding of what it means to live with Vitiligo:

• Stories of falling into deep depression
• Stories of contemplating suicide
• Stories of isolation and addiction
• Stories of death

We want the individuals telling their stories to change the narrative of what people think of Vitiligo. We wantto eliminate the stigmas by allowing the viewing audience to meet the people who will share their stories of pain and promise along with their communities who have provided support, love, and purpose to these courageous group of women.

We are traveling to the homes and communities of each woman portrayed in this film – conducting interviews with spouses, children, members in their community, parents, and friends – along with the women themselves. Often, these interviews are personal and painful – but part of their story to let the viewing audience know how living with Vitiligo affects them individually.

Alicia Roufs

Alicia has lived with Vitiligo her entire life. Growing up, she endured painful bullying, isolation, and rejection. In her pain, she turned to the most unlikely place for comfort. Now, Alicia lives her life spreading light and love in her community in New Prague, Minnesota. With her family by her side, she has learned to live with the stares and ignorance, and thanks God for giving this disease to her – for it gave her purpose in a way she would never believe.

Katrina Christian

Diagnosed just 9 years ago, Katrina’s world could have become obsolete, if not for the love of her then partner (now husband) and her faith in God. Katrina shares the source of much of her pain, the way she turned to God despite it; and how she lives in her truth of being someone with Vitiligo in a position to help others – standing tall in firm in her beauty.

Patricia Rossy

Her tough exterior doesn’t mask the internal pain Pat has gone through since her diagnosis. As she rode the New York subways back and forth to her Manhattan job, where she worked as the front desk receptionist, she hid her anger of looks, points, and comments until she returned home where she cried until she had to do it all over again the next day. But Pat has turned her anger into purpose by helping others work through their pain as the Vice President of VITFriends.

Millicent Meadows

Many stones have been thrown in Millie’s path of life, and Vitiligo was just one of them. For years Milli struggled with self-acceptance, and the affect others perceived of her, such as fear of losing her ethnicity. She hopes to leave a legacy for those to come to always stay encouraged, unwavering and resilient.

Valarie Molyneaux

Valarie was first diagnosed with Vitiligo in 2002. Not being familiar with the condition and learning there was NOTHING ger doctor could do, Valarie fell into a deep depression. There was NO support group or people who she could turn to, she started her own advocacy group, VITFriends – a national organization which provides information, support, awareness, and advocacy for those living with Vitiligo and their families.

The Research

Another powerful addition to this film is the information of the advocacy, research, and cures for Vitiligo patients.

With the help of VITFriends, More Than Our Skin will explore the opportunity to affect changes in VitiligoLegislation; Insurance Compliance; Support Programs and a b intentional study on the research and cures.

This film will unpack the medical mysteries of this disease and talk to experts trying to determine how and why this affects individuals and not others.

Dr. John E. Harris, MD, PhD

Dr. John E. Harris directs the Vitiligo Clinic and Research Center at UMass Medical Center in Worcester, Massachusetts, 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 approaches to better understand autoimmunity in Vitiligo, with a particular focus on developing more effective treatments.

Dr. Richard H. Huggins, M.D.

Dr. Richard H. Huggins, M.D. joined the dermatology staff at Henry Ford Hospital in 2012 and was named a division head of the Department of Dermatology in 2018. Dr. Huggins’ clinical and research interests include Vitiligo, hidradenitis suppurativa, and skin of color. A fellow of the American Academy of Dermatology, Dr.Huggins also serves on the board of directors of the Global Vitiligo Foundation and is on the executive boardof the V-Strong Vitiligo support community based in Detroit, Michigan.

Dr. David Rosmarin, M.D.

Dr. Rosmarin is a clinical investigator and Vice-Chair for Research and Education at Tufts Medical Center focusing on clinical trials for inflammatory disorders of the skin, including vitiligo.  For his training, Dr. Rosmarin went to medical school at NYU, dermatology residency at Boston University-Tufts Combined training program, and fellowship at Brigham and Women’s Hospital. Dr. Rosmarin joined Tufts Medical Center in 2013 focusing as a clinical trial investigator. In 2016, Dr. Rosmarin became the Director of the Clinical Trials Unit in the Department of Dermatology at Tufts Medical Center. Dr. Rosmarin initiated the first study into the use of JAK inhibitors for vitiligo. He has published on the use of ruxolitinib cream repigmenting vitiligo and the importance of ambient light and synergy of phototherapy in treatment. Dr. Rosmarin has created the facial-VASI outcome measure for measuring improvement in repigmentation of the face. He also has been leading the efforts for the first phase 3 program of ruxolitinib cream in vitiligo which will hopefully lead to the first FDA approved medication for repigmentation. Dr. Rosmarin is an expert who treats patients from all over the world with vitiligo and gives talks to medical students, residents, fellows, and other healthcare professionals.  

The Advocacy

This film also intends to answer the very simple question, where do we go from here? To answer this question, we need to start with where we’ve been. In 1975, the National Vitiligo Control Act was introduced. The findings of declared that Vitiligo is a disfiguring, inheritable disease which cripples the personality of individuals suffering from it and which afflicts about three percent of the U.S. population. The bill authorized the following funds to be appropriated for such purpose of research and treatment of $2,000,000 for fiscal year 1975, $3,000,000 for fiscal year 1976, and $4,000,000 for fiscal year 1977.

Fast forward 40 years, Congressman Hank Johnson (GA-04), introduced H.Res. 636 to designate Oct. 17th as “National Vitiligo Awareness Day.” This bipartisan bill honors the courageous children and adults who while living with this condition, often overcome many different forms of harassment and their own personal issues to fight on and contribute to our society.

But we need more. We need more advocacy, more demonstrations, more science, and more resources to bring a cure to a disease that is often misunderstood and mischaracterized as something “cosmetic”: involving or relating to treatment intended to restore or improve a person's appearance. This film will help push the lever in the right direction.

Conclusion

What individuals want is very simple: for the world to understand that this condition is anything but cosmetic and what these medical experts are working towards is to give back a bit of one’s own self before the effectsof Vitiligo took over. That Vitiligo is More Than Our Skin.