After a horrid year, free streaming of ‘Dancing at the Vatican’ is an inspirational gift and a call to aid Huntington’s disease families

Dancing at the Vatican, the 38-minute documentary featuring South American Huntington’s disease-afflicted families’ remarkable 2017 encounter with Pope Francis at the Vatican, will be streamed indefinitely on YouTube for free starting December 1.

“The film has a distinct Christmas theme – the surprise invitations to the HD families in Latin America all arrived on the Epiphany,” wrote Dancing at the Vatican producer and narrator Charles Sabine in a recent e-mail to me, referring to the Catholic feast day, January 6, on which the HD families in South America received the official invitations to meet the pope. “So, I am going to be encouraging people to regard this as an inspirational gift at the end of a pretty horrid year.”

 

HD families from Colombia, Venezuela, and the pope’s homeland, Argentina, had met with the pontiff at #HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America (click here to read more). Some 1,500 HD family members and their supporters – including my family and me – attended from around the world.

 

For the first time, a world leader had recognized Huntington’s disease.

 

Pope Francis with HD families in Rome, May 18, 2017 (photo by #HDdennomore)

 

Online starting December 1

 

Starting December 1, you can watch Dancing at the Vatican by clicking here. Also, the English-language film now has versions with subtitles in French, German, Italian, Portuguese, and Spanish.

 

The producers request that people click on the “subscribe” button on YouTube and leave comments on the film to help facilitate tracking of its viewings and to further support the HD cause. In the spirit of a heartwarming holiday gift, they also ask that viewers share the video with at least two people who have not heard about HD before.

 

According to Ignacio Muñoz-Sanjuán, Ph.D., a leading HD researcher and a co-organizer of #HDdennomore along with Sabine, the papal audience brought “critical” recognition to HD families living in “extremely vulnerable conditions.”

 

“This has touched them and their communities in many ways,” Dr. Muñoz wrote me. “But their plight continues, and the documentary should be a call to action to help those in most need, regardless of where they live in the world.”

 

In the spirit of Dancing at the Vatican, the HD community can come together to “give voice to the voiceless” and raise badly needed funds for local patient associations as well as Factor-H, a nonprofit organization that he co-founded to aid Latin American HD families, Dr. Muñoz added.

 

A message for all faiths and backgrounds

 

Dancing at the Vatican captures key moments of the impoverished, disease-stricken families’ extraordinary journey – some had never ventured beyond their home towns; some even lacked birth certificates – to their meeting with the Spanish-speaking Francis, the first Latin American pontiff in the Catholic Church’s 2000-year history.

 

#HDdennomore was open to people of all faiths and backgrounds, as were the three in-person screenings of Dancing at the Vatican in Los Angeles, London, and San Diego.

 

Sabine and the film’s organizers had hoped to organize additional screenings in the U.S., Europe, and South America.

 

However, the COVID-19 pandemic – which has made 2020 a trying year for all of humanity – forced the organizers to scuttle those plans. Instead, they have focused on the plan to provide free online access to Dancing at the Vatican.

 

Depending on the local impact of the pandemic, some communities might organize in-person screenings, Sabine explained.

 

“For example, in New Zealand, where COVID-19 has been virtually eradicated, there will be screenings in the first week of December in actual full movie theatres,” he noted.

 

Taking on HD families’ suffering

 

Sabine said that the Vatican’s communications department will help promote the online launch. In addition, the producers will promote the film “on all the relevant family organization websites and social media” and also reach out to clinicians, pharmaceutical companies, and nonprofits involved in HD, he said.

 

The screenings and publicity about the online screenings have been sponsored by Roche, Ionis Pharmaceuticals, Inc., Wave Live Sciences, and Takeda.

 

According to Sabine, the film demonstrates that “anything can be achieved if you put together enough people who believe that nothing is impossible.”

 

Also, he suggested, the HD community can use Dancing at the Vatican to promote the cause by “showing that, as Pope Francis said, it is time for HD families to be ‘Hidden No More.’” 

 

Dr. Muñoz pointed out that HD continues to devastate the South American families portrayed in the film. (An upcoming article will update the families’ stories.)

 

The film and the efforts of advocates such as Sabine and Dr. Muñoz echo the words of Pope Francis, who in his speech at #HDdennomore emphasized “what Jesus himself taught us.”

 

“Throughout his ministry, he met many sick people,” Francis stated. “He took on their suffering; he tore down the walls of stigma and of marginalization that prevented so many of them from feeling respected and loved.”

Advocacy in the workplace: raising awareness about Huntington’s disease and brain health

In the fight to defeat Huntington’s disease and other brain disorders, advocacy in the workplace can attract new allies, boost awareness, and serve as a bridge to resources for those facing HD.

November 4 will mark five years since I went public about my gene-positive HD status in my essay “Racing Against the Genetic Clock,” published in The Chronicle of Higher Education.

Before that day in 2012, I lived in the “terrible and lonely HD closet,” with virtually nobody outside the HD community, family, and close friends aware of my family’s struggles. My name appeared nowhere in the local, tri-annual HD newsletter that I wrote and edited from 2001-2007. I began this blog in 2005 with a pseudonym, “Gene Veritas,” “the truth in my genes,” a reflection of my status as an HD-gene carrier.

Starting with the Chronicle article, I have integrated my advocacy into my work as a professor at the University of San Diego (USD).

Bioethical challenges

In 2014, I started collaborating with Laura Rivard, Ph.D., an adjunct professor in the USD Department of Biology who teaches a course on bioethics. One of her students, Nazin Sedehi, recorded a video interview of me recalling my family’s experiences with genetic testing for two websites aimed at helping a general audience explore bioethical dilemmas.

I’ve spoken on HD to Dr. Rivard’s class three times. In February 2016, I gave a presentation titled “Huntington’s Disease and Bioethics: A Personal Case Study.” The talk focused on how advances in medicine and biotechnology have provided new tools for understanding both human biology and the situation of HD-affected individuals and families.

“These changes – these huge transformations that we’ve been going through scientifically and socially – have put people in unprecedented predicaments and thus, they are creating new bioethical challenges,” I stated. I reflected on how HD families faced decisions about predictive testing, family planning, abortion, suicide, euthanasia, and more.

You can watch my presentation in the video below. During the other class sessions, I provided commentary and answered questions after we watched the HBO documentary The Lion’s Mouth Opens, about young filmmaker-actress Marianna Palka’s decision to get tested for HD.

Huntington's Disease and Bioethics: A Personal Case Study from Gene Veritas on Vimeo.

‘You are precious’

My advocacy reached a milestone in May, when I traveled with my family to Rome to help represent the U.S. HD community at HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America. I reported on the audience in several blog posts (click here to read one example).

My trip was made possible by USD’s College of Arts and Sciences, the Frances G. Harpst Center for Catholic Thought and Culture (CCTC), the International Center, and the Department of History. Back home, on September 28 I gave a talk exploring the social, scientific, and religious meaning of this extraordinary event. Some 60 students, faculty, and members of the San Diego HD community attended.

In one of the most emotional speeches I have given, I repeated the words of Francis’ address that most moved me:

For Jesus, disease is never an obstacle to encountering people, but rather, the contrary. He taught us that the human person is always precious, always endowed with a dignity that nothing and no one can erase, not even disease. Fragility is not an ill. And disease, which is an expression of fragility, cannot and must not make us forget that in the eyes of God our value is always priceless. Disease can also be an opportunity for encounter, for sharing, for solidarity. The sick people who encountered Jesus were restored above all by this awareness. They felt they were listened to, respected, loved. May none of you ever feel you are alone; may none of you feel you are a burden; may no one feel the need to run away. You are precious in the eyes of God; you are precious in the eyes of the Church!

I told the audience: “I saw HD turn my mother into a shadow of herself. I deeply fear losing my ability to speak and, especially, to write. Hearing that we HD people are ‘precious’ was a huge morale booster.”

I hope that my presentation raises awareness about HD in the U.S. Catholic community and beyond, and helps spur at-risk individuals and others to exit the HD closet and join the movement.

You can watch the speech in the video below, recorded and edited by Scott Lundergan of USD media services.

'Hidden No More': Pope Francis' Historic Audience with the Huntington's Disease Community from Gene Veritas on Vimeo.

Warning about football’s dangers

On October 17, another dimension of my workplace advocacy – the effort to raise awareness at the university about the dangers of tackle football – reached a crescendo. A resolution to ban football at USD, proposed by Daniel Sheehan, Ph.D., Nadav Goldschmied, Ph.D., and me, was voted on in the Academic Assembly of the College of Arts and Sciences.

USD football is a non-scholarship sport, so its profile is not as high as at some campuses, but it has fervent fans among students, alumni, and even faculty. At a USD Faculty Senate meeting last December, President James T. Harris III, D.Ed., reaffirmed his opposition to cancelling the program because, in his words, “no universities have closed their football program […]  because of concussion evidence yet.”

In the weeks leading up to the meeting, I remembered Pope Francis’ encouragement. I also frequently recalled my mother’s struggle with HD and my father, the “HD warrior” who cared for her for more than a decade.

Our resolution focused on the scientific evidence about football’s threat to the brain, especially the disease known as CTE (chronic traumatic encephalopathy), first seen in boxers in the 1920s and, over the past ten years, identified in the autopsies of an increasing number of National Football League, college, and high school players. We cited the publication in July of an article in the Journal of the American Medical Association documenting CTE in 110 of 111 autopsies of decease NFL players. (For the resolution’s rationale, please click here).

CTE produces symptoms similar to HD and other neurological diseases such as aggressiveness and cognitive loss.

However, many faculty members defended the football program because of virtues such as character-building. Surprisingly, this group included biologists and other natural science specialists.

After one of the most heated faculty debates I have witnessed in 25 years at USD, the motion lost, 50-26. However, 30 professors abstained – reflecting perhaps discomfort about offending their colleagues and/or indecision on the matter.

As a brain health advocate, I was disturbed by the vote. In an upcoming article, I will explore the USD debate in detail, in particular how it shows how scientific evidence is often ignored or manipulated in critical debates, and what this means for the HD and other disease communities.

Immediately after the assembly, I met with about 70 members of USD’s chapter of Phi Delta Epsilon, the co-ed pre-medical fraternity, to speak on HD and the papal audience. I urged them, as future members of the health professions, to be aware of CTE and to safeguard the well-being of football players. I also defended the continued inclusion in our health system of those with pre-existing conditions like me who in the past often hid their potential illnesses.

Fraternity president Nicholas DiChristofano pledged that the organization would support the HD community.

A student stands up for her family

As a result of my public stance, USD faculty members, students, and former students have supported the cause with generous donations and participation in the annual Team Hope Walk of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA). Many read this blog.

The Serbin Family Team of the 2014 HDSA-San Diego Team Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Prof. Yi Sun (of the USD History Department), Gene Veritas (aka Kenneth P. Serbin), Regina Serbin, and Allan Rappoport (photo by Bob Walker)

Through my advocacy, I can connect people to HDSA’s resources.

At day’s end on October 17, I met with Sydney Smyer, a 19-year-old USD biology major.

On October 3, Sydney had sent me the following email, quoted here with her permission:

My name is Sydney Smyer. I am a student here at USD and I attended your talk on Huntington’s disease and the explanation of His Holiness, Pope Francis’ involvement in the Huntington’s disease community. I was quite moved and enlightened, Dr. Serbin. Huntington’s disease runs in my family. My grandfather died from it as well as his father and three of his brothers. His remaining brother has recently been diagnosed with Huntington’s disease. Soon I will be tested, especially because my mother refuses to be tested and my uncle has been showing symptoms for some years now. I think your words would enlighten my family and bring them to the fullness and understanding that is comforting in so much uncertainty for our family members.

Sydney, whose family is Catholic, will share my #HDdennomore video with her family. They have an extremely rare disease known as HDL1, Huntington’s disease-like syndrome, a genetic disorder producing HD-like symptoms.

Sydney and I talked for almost an hour about our journeys with HD. Though I mentioned my own past fears about my HD status jeopardizing my career and insurance, Sydney was adamant about facing HDL1 openly and standing up for her family.

She accepted my invitation to the October 30 meeting of the HDSA-San Diego support group, featuring the highly popular annual HD research update by Jody Corey-Bloom, M.D., Ph.D., the director of the local HDSA Center of Excellence for Family Services and Research.

Stepping forward

To me, there is no more important work in the HD community than the mutual assistance we provide at the support group.

When I exited the HD closet five years ago, I did not imagine that one day a USD student would join our group.

I am grateful to USD and my colleagues for their support as the HD community seeks a treatment for this incurable disorder.

As a professor, I have the privilege of melding my academic work with advocacy.

However, many of us in the HD community have unique skills and positions with the potential for building bridges to our employers and others we associate with on personal and professional levels. Doing so can reap many unexpected benefits.

Sydney's courage should inspire us all to step forward.

Pope Francis declares: Huntington’s disease should be ‘hidden no more’

Wow! In a stirring speech at the Vatican transmitted globally, Pope Francis declared to the world on May 18 that Huntington’s disease should be “hidden no more!”

“It is not simply a slogan, so much as a commitment that we all must foster,” the head of the Catholic Church said of the idea embraced by the roughly 1,500 HD family members and supporters gathered at the Paul VI Audience Hall just a few yards from St. Peter’s Square. They had gathered for "HDdennomore: Pope Francis's Special Audience with the Huntington's Disease Community in Solidarity with South America."

“The strength and conviction with which we pronounce these words derive precisely from what Jesus himself taught us,” the pope continued in Italian, as Spanish and English speakers listened to a simultaneous translation on headsets. “Throughout his ministry, he met many sick people; he took on their suffering; he tore down the walls of stigma and of marginalization that prevented so many of them from feeling respected and loved.”

Click here to read the full text of the speech in English.

After the speech, the highly popular and charismatic Pope Francis stopped to greet, hug, kiss, console, and have selfies taken with about 300 HD family members, HD researchers, pharmaceutical company representatives, and dignitaries seated in the front rows of the auditorium.

Overtaken with the pope’s powerful presence, some people cried uncontrollably as he stood before them.

The emotional charge traveled across the crowd. I welled up with tears as he got closer to my family and me in the third row.

After greeting my wife Regina and daughter Bianca and putting his hands on the head of my 78-year-old mother-in-law Lourdes, Pope Francis arrived at my place.

As I had planned, I showed the pope a picture of my mother Carol Serbin and father Paul Serbin, well-dressed and smiling in a formal pose, a photo taken after she had already been diagnosed with HD.

“My mother died of Huntington’s,” I told the Pope in his native tongue of Spanish. “My father cared for her for twenty years.”

I gave Francis a copy of each of my main books on the history of the Church in Brazil, explaining the theme of each with a brief phrase: priestly training and the Church’s struggle against the dictatorship in Brazil. I knew the themes were dear to him as the leader of the world’s Catholic clergy, respected colleague of Brazilian Catholic leaders and their flocks, and untiring proponent of social justice.

Francis said nothing, but he looked me in the eyes.

Somehow, my hands were now firmly holding the pope’s, and I told him: “Many thanks for supporting our community!”

Gene Veritas (aka Kenneth P. Serbin) with Pope Francis, May 18, 2017. In foreground, with back to camera, Bianca Serbin (photos by Regina Serbin).

Then Francis moved on to the next person.

When he finished circulating among the people, Francis returned to the stage, looked back at us and waved, and then exited with his papal entourage.

After listening to some closing music by performers from HD families, we filed out of the auditorium.

As I wrote in a blog note my cell phone, I felt “drunk with excitement” as I left with my family, hugging and taking a selfie with event co-organizer and HD global advocate Charles Sabine, greeting fellow advocates from South America, and at one point becoming disoriented and nearly tumbling to the ground. Regina became concerned that I would injure myself.

We had done it! We had witnessed Pope Francis decisively place Huntington’s disease on the world agenda.

Above, the audience at the May 18, 2017, papal audience on Huntington's disease. Below, Gene Veritas and Charles Sabine (photos by Gene Veritas).

(Click here to watch the audience on the Vatican’s YouTube channel. In my next article I will comment further on Francis’s HD speech and explore in detail the event and its impact.)

(My trip to Rome was made possible by the College of Arts and Sciences, the Frances G. Harpst Center for Catholic Thought and Culture, the International Center, and the Department of History of the University of San Diego. I am grateful for the institutional and moral support of my colleagues and students.)

The gifts

Christmas brings the profoundly sad reminder of receiving the news of my mother’s diagnosis of Huntington’s disease on December 26, 1995. She died of HD in 2006 at the age of 68. Remembering her struggle also reminds me that I tested positive for HD in 1999.

This year, however, I’ve been preparing for Christmas differently by reflecting on the wonderful gifts I’ve received.

Life itself is a precious gift. I was born because of my parents’ love for each other and their desire to raise a family.

My life is also a gift from God.

I am extremely lucky to have the gift of health. Each day, I am pained by the suffering endured by families afflicted with the disease. However, as I look forward to my 53^rd birthday on December 31, I am deeply thankful to have remained asymptomatic past the age of my mother’s probable onset, her late forties.

The gift of health allows me to continue my work as an HD advocate, fighting for those who cannot fight for themselves and promoting the search for effective treatments.

Just last month I exited the terrible and lonely“Huntington’s closet” by revealing my story and using my real name, Kenneth P. Serbin, in a mainstream publication. On December 16, I repeated the experience in Brazil, where I am a recognized scholar and regular guest writer in the press; I received a tremendously moving response from friends and even former leading government officials.

For the first time in the 17 years of my journey with HD, I can advocate for the cause freely and openly, thus multiplying the impact of my efforts and honoring the memory of my “HD warrior” parents.

More than ever, I feel the need to help others. This desire and responsibility form the basis of all the great religious traditions.

In my Catholic faith, the advent of Baby Jesus, who came to save the world from imperfection and death, culminated in one of the greatest commandments to humankind: to love our neighbors as ourselves.

My family's miniature nativity scene, made by an artist in Latin America

In the wake of my exit from the HD closet, I have achieved an incredible sense of lightness and greater closeness to others. Friends have seen it in my face and felt my passion for the cause.

“The truth will set you free,” Jesus said. In recent days, I have also felt closer to God than I have in a long time. Thinking of the drive to defeat HD, I have recalled His mission: “I have come that they might have life, and have it more abundantly.”

My greatest gift is my family.

In January 2000, my wife Regina and I received the gift of our daughter Bianca’s negative test for Huntington’s while in the womb.

Together Regina and I nurtured her, and now we must help her navigate the challenging and rewarding teenage years.

In this very difficult past week, as we Americans have struggled to comprehend the senseless Newtown school massacre, I have frequently recalled President Barack Obama’s beautiful description of parenting: “Someone once described the joy and anxiety of parenthood as the equivalent of having your heart outside of your body all the time, walking around.”

Faced with so many extraordinary demands and risks, HD families especially feel that anxiety. Yet we also have great gifts – including an immense capacity to appreciate the gift of life and the impact that a disease like HD can have on children.

My challenge is to preserve my gift of health so that I can love and support Regina and Bianca for many years to come. 

To you and yours, Merry Christmas, Happy Holidays, and a 2013 filled with the gifts of hope and good health!

Our 2012 holiday greetings photo, taken at Yosemite National Park