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.”

‘Dancing at the Vatican,’ about Huntington’s families’ remarkable papal audience, premieres July 27

Dancing at the Vatican, a short documentary featuring South American Huntington’s disease-afflicted families’ remarkable 2017 encounter with Pope Francis at the Vatican, will premiere in Los Angeles on July 27.

The 38-minute film captures key moments of those 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.

The documentary is narrated by Emmy-award-winning former NBC-TV foreign correspondent Charles Sabine – like me, an asymptomatic HD gene carrier – and one of the lead organizers of “HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America.”

“In the course of 26 years as a television journalist, living through more than a dozen wars, five revolutions, and four earthquakes, I witnessed many examples of people achieving the seemingly impossible,” Sabine says in introducing the film, which I previewed online July 21. “None, though, was as inspirational as the tale I’m about to tell.”

The film portrays the struggles of HD family members such as Dilia Oviedo Guillén, a Colombian woman who lost her husband and five children to the disease.

Dilia provides 24-hour care to four more adult children. “I have to wash, cook, and feed them,” she says in the film. “You have to do all that for them. They can’t use their hands to eat. They’re my children, so I feel as if I have their illness.”

Dilia has no professional caregivers or physical therapists to assist her. The family is so poor that she had to bury three of her children in a single grave.

In showing the struggles of Dilia’s family and others, Dancing at the Vatican captures the underside of the HD world. Such families deal with one of the humanity’s most devastating diseases and severe poverty, lack of opportunities, poor or non-existent infrastructure, neglect by the government and society, and stigma and discrimination.

However, as Sabine wrote me in an e-mail today, he and the filmmakers also sought to include "happy tales set against the dark canvass of our disease."

“‘Pope meets sick people’ was not a headline the world’s media would care about,” Sabine wrote.  “‘Pope meets sick people with an extraordinary visual backstory,’ was.”

The film follows Dilia’s family and four others as they tour Rome; are received in the Italian Senate by its president and world-renowned HD researcher, Senator for Life, and #HDdennomore organizer Elena Cattaneo; and anticipate the big moment with Pope Francis.

From the Dancing at the Vatican website. Dilia Oviedo Guillén is pictured in the center.

Proceeds benefit Factor-H

The premiere will take place at the SilverScreen Theater, Pacific Design Center, 8687 Melrose Avenue, West Hollywood, CA. Doors open at 5:30 p.m., with a screening of the film at 6 p.m., followed by a Q&A and refreshments. Actress and singer Kate Miner, also from an HD family and a participant in the papal audience, will emcee the evening. Self-parking on the street or at the Center ($10) is available.

Directed at the HD community and the general public, the event and the film seek to raise awareness about HD and, as key HD researcher Ignacio Muñoz-Sanjuan, Ph.D., wrote in an e-mail, “the desperate situation of many HD families in Latin America.”

Sponsored by HD-focused drug developers Ionis Pharmaceuticals, Inc., Genentech, and Wave Life Sciences, admission to the premiere is free. (Click here to register.)

Sabine recorded a one-minute video personally inviting the HD community to participate in this “extraordinary celebration.”

Those who wish can contribute to Factor-H, a nonprofit that seeks to improve the quality of life of poor HD families in Latin America. Founded by Spanish-born neuroscientist Dr. Muñoz-Sanjuan and the Argentine physician Claudia Perandones, both featured in Dancing at the Vatican, Factor-H currently supports families in Chile, Colombia, Peru, and Venezuela. Venezuela’s Lake Maracaibo region has one of the world’s densest clusters of HD families, with many residents donating blood in the scientific quest for the HD gene.

Instrumental in #HDdennomore, Drs. Muñoz-Sanjuan and Perandones saw the papal audience as a way to further Factor-H’s work. The organization seeks to expand assistance to other nations.

Sabine and the filmmakers chose Los Angeles for the world premiere because Southern California is a “‘perfect storm’of the HD community – a collaboration of the best of researchers, advocates, clinicians and support groups,” Sabine wrote. However, he also recalled the “truly international nature of the event and film,” noting that 28 countries were represented at #HDdennomore.

In fact, the film has planned premieres in Washington, D.C., London, Rome, Glasgow (Scotland), and South America. Later it will become available online.

Bringing joy and hope

My wife Regina, daughter Bianca, and Brazilian mother-in-law Lourdes took part in #HDdennomore (click here to read more). 

We watched Pope Francis declare that HD should be “hidden no more.”

“It is not simply a slogan, so much as a commitment that we all must foster,” the pope urged the audience of some 1,500 HD community members from around the world.

The film depicts how, after his speech, Francis greeted and hugged each member of the HD-afflicted South American families, sometimes caressing their heads as they spoke to him and cried.

Watching Dancing at the Vatican took me back to those poignant moments in the papal meeting hall. I teared up, as I did that day. 

As Sabine states in the film, #HDdennomore was “the biggest event in the history of Huntington’s disease.”

Dancing at the Vatican underscores the deep medical and social suffering of HD, which, in South America, is exacerbated by poverty and inequality.

However, as the film also shows, those HD families got a wonderful moment to celebrate, smile, and dance.

Thanks to the organizers of #HDdennomore, Factor-H, and Pope Francis, the terrible burden of HD perhaps feels a bit lighter for all affected families. We can all share in that joy – and the hope offered by Francis – by watching Dancing at the Vatican.

(For background on #HDdennomore and its impact, click here and here. A future article will explore Factor-H in depth.)

Francis made a day of ‘superlatives’ for the Huntington’s disease community, says event co-organizer

Pope Francis created a moment of “superlatives” for the Huntington’s disease community in his historic May 18 meeting with HD-afflicted families, international advocate Charles Sabine said a day later, citing record involvement in the cause, global awareness, and a “poignant” focus on HD’s tough challenges.

A former foreign correspondent for NBC News and presymptomatic carrier of the HD gene, Sabine helped organize “HDdennomore, Pope Francis’s Special Audience with the Huntington’s Disease Community in Solidarity with South America” (click here for background on the event).

Sabine, as did prominent HD scientist and Italian senator-for-life Elena Cattaneo, read an introductory statement preceding Francis’s own speech.

“Your Holiness, today marks a new chapter in the history of humanity’s forgotten families,” Sabine told the pontiff as the audience and web viewers from around the planet listened. “Never before has a world leader recognized the suffering of Huntington’s patients and their carers.”

He described HD as the “harshest affliction known to mankind” and also the “most misunderstood, and until today, the most hidden.” Despite that, Huntington’s has never defeated the human spirit, Sabine asserted. Francis could now affirm that “it is not a sin” to have HD.

Thanking the pope on behalf of the HD community, Sabine praised Francis’s “wisdom” and “compassion, which has shone the light of your church on our disease, at last, so that it be hidden no more.”

In his own stirring speech, Francis elaborated on some of Sabine’s points and declared that HD disease should indeed be “hidden no more!”

Visiting the HD families

The day after, Sabine visited the several dozen HD family members from South America, a main focus of HDdennomore, at their lodgings, the Passionist fathers’ monastery. Located in the historic center of Rome just south of the Colosseum and with a large inner courtyard, the monastery provided the HD families with an idyllic setting for repose and meals. HDdennomore provided transportation to the Vatican and other sites during the week-long stay in Rome.

Charles Sabine (center, white shirt), flanked by HDdennomore co-organizers Ignacio Muñoz-Sanjuan, Ph.D., and Senator Elena Cattaneo, Ph.D., and surrounded by South American HD family members (photo by Gene Veritas, aka Kenneth P. Serbin)

The guests included the juvenile-HD-afflicted 15-year-old Brenda of Buenos Aires, Argentina, the pope’s hometown, and 13-year-old Anyervi, a member of an HD family from Venezuela’s Lake Maracaibo region, the site for decades of critical research in the search for the HD gene led by Nancy Wexler, Ph.D., who attended the event. Both Anyervi and Brenda have been ostracized by other children because of prejudice regarding HD.

Before the pope’s arrival for the audience, Sabine called the two on stage individually. Anyervi received a soccer ball and jersey signed by Brazilian soccer superstar Neymar, who greeted the boy in a short video. Brenda was serenaded in person by Argentine smash-hit singer-songwriter Axel.

Sabine’s reflections

At the monastery, an upbeat Sabine circulated among the families and HD advocates, conversing and joking. He took a break to speak with me about his impressions of the event in its immediate aftermath.

GV: What is your feeling about the meeting with the pope?

CS: It’s mostly a feeling of immense relief that, after a year and a half of planning, on a day when a more than a million things could have gone wrong, nothing major did. That’s my immediate sense.

But I’m so extraordinarily pleased at the words of Pope Francis. That was beyond my control other than the set of notes which I gave him in preparation, which he requested, about the disease. He could not have been more eloquent, poignant, and to the point and focused on the real problems and issues that you and I and everyone else faces with this disease.

And he eloquently and, I believe, truthfully and sincerely made the point that this disease should be – and he used these words – “hidden no more.” And that is something that I could never really have dreamt would happen in my lifetime.

GV: That he’d actually use those words?

CS: Yes. But he did say – and this is important – that it is a great slogan but that it must become more than just a slogan. That’s now what we’ve got to do.

GV: So that’s the question, Charles: what comes next for “HDdennmore” and this whole movement?

CS: Well, I was a little surprised when I read in The Washington Post this morning that the “HDdennomore” event in the Vatican yesterday was the beginning of an initiative. That sounds a little bit daunting. It was the initiative to me! To hear it described as a beginning is both daunting and exciting. Okay, I’ll take that. Let’s call this just the beginning. Where next? Washington? London? We’ll see.

GV: So you’re kind of basking in the joy of this for the time being?

CS: Yeah, I’m just so pleased for all of these families who are standing here in this courtyard of this peaceful Passionisti convent here in Rome with all of these patients. I saw many of these patients a month ago in their homes in Maracaibo. Physically they appear better. They are absolutely flying. They are all smiling, they’re all laughing, they’re all talking.

Okay, they have just had a pretty amazing experience, but it just shows really what can happen. Already we’ve had messages from all over the world of people not only just congratulating us. I’m stunned how many people watched the event. I had no idea that so many people would watch it. I’ve had messages from people who were watching it in the middle of the night on the West Coast. There was one nurse whose family were watching it in the Philippines. People were watching this all over the world.

South American HD families preparing for a group photo at the Passionist fathers' monastery, May 19, 2017 (photo by Gene Veritas)

The reaction has already been intense. We’ve had messages of just not support for the event, but also financial bequests. Anyervi, the little 13-year-old who got the Neymar shirt, he’s already had a wealthy benefactor in Italy who’s asked to sponsor him now for the rest of his life. We’ve had other requests to help.

We had a meeting just yesterday, which followed after our event, with industrialists who are looking into ways in which they can help South American families, in particular in Venezuela, where one of them has land he’s donating now with a view to providing food. There was a clinicians’ meeting after that. They were coming up with ideas for working together to get drugs and medical services into South America. It’s already happening.

Anyervi of Venezuela (photo by Gene Veritas)

GV: Did you have a meeting with a cardinal and/or other people in the Vatican afterwards?

CS: Yes, I wasn’t present at them, but there have also been meetings with cardinals to get across the points that Pope Francis made so eloquently and directly about how this disease has been ignored.

And he admitted it. He was very frank. The pope said and was implicitly admitting that his church had failed. He didn’t want to say it like that, but he said these people have been ignored. He didn’t say these people have been ignored, but not by the Church. He said they’ve been ignored. That means they’ve been ignored by the Church. And that’s a wonderful admission.

What we need to do now is to insure that his words are now made into actions on the ground by the cardinals, the archbishops, and the priests across not just South America but all around the world to make it understood that this should be a disease that no one should feel, as I said in my words there, that it is a sin. I spoke to the pope yesterday. I said thank you for making clear the truth – one of the truths that’s been omitted from this disease for centuries – which is that it’s not a sin to have Huntington’s disease in your family.

GV: The pope mentioned the issue of embryonic stem cells. Do you want to comment on that?

CS: It was a little bit of a shame that he did that. It’s the one thing about that speech that was a little bit disappointing. I don’t think he needed to get into that because it wasn’t particularly relevant to that event.

Unfortunately, many of the newspapers from around the world have taken that as a headline, which is a bit of a shame. [The Pope stated that no scientific research, no matter how “noble” its goal, “can justify the destruction of human embryos.”] Of course, that’s an issue that’s still a stumbling block with the Catholic Church. But I personally don’t think that for one second his mentioning that in his talk should take one iota away from the fact that it was a resounding, total success.

Pope Francis during the HDdennomore special audience (photo by Gene Veritas)

GV: Do we know who wrote the pope’s speech?

CS: I don’t know. I gave him three pages of notes that talked about what we go through, including, in particular, the shame and the stigma. And certainly the themes that were in that I saw in there. I don’t whether he wrote it or if he had others. But they wrote it very, very well.

It was really, I thought, brilliantly working in, as he would naturally, the point of mercy and Jesus. The event yesterday personified yesterday more than any other event exactly that new philosophy of his of putting mercy before doctrine, which is not a popular one amongst many on the right.

But the fact is, there were so many superlatives yesterday. There were 1,700 people there, according to the Associated Press and Reuters. That was by far and away the largest collection of people with regard to Huntington’s disease, by some measure. There were 150 patients – at least – that were there, and probably a lot more. That in itself is another record. There have never been that many people in one room affected by Huntington’s disease. There could have been people in there affected by disease that we didn’t meet.

There were at least 27 countries represented. I don’t know whether that’s a record, but certainly the other two are.

(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.)

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.)