Let’s Dance: The Pope and HD Families Meet in a Special Film

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by Carlos Briceño |

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Dancing at the Vatican” is a 2019 documentary film created and narrated by Charles Sabine, a former television reporter and foreign correspondent. It shines a spotlight on several families from Latin America who have Huntington’s disease (HD). The film culminates with the families, who are from poor towns in Venezuela, Colombia, and Argentina, participating in a May 2017 special audience at the Vatican that was attended by Pope Francis.

The event was the result of a global coalition of HD advocates who had come together under the HDdennomore (pronounced “Hidden no more”) initiative to raise awareness about HD and inspire action to end the stigma and shame that’s commonly perceived about the disease.

“For far too long, the fears and difficulties that characterize the life of people affected by Huntington’s disease have surrounded them with misunderstandings and barriers, veritably excluding them,” Pope Francis told the gathering. “In many cases, the sick and their families have experienced the tragedy of shame, isolation and abandonment. Today, however, we are here because we want to say to ourselves and all the world: ‘Hidden no more!’ …

“Disease can also be an opportunity for encounter, for sharing, for solidarity. … 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,” he added.

The film, recently made available on YouTube and Amazon Prime Video, affected me on several levels.

Firstly, as a Catholic, I was grateful to see Pope Francis share his concern for the plight and suffering of people in the HD community. A common notion in the articles I read about the event said it was the first time a world leader had acknowledged HD. The man who is the spiritual father of the Catholic faith I believe in showed me that he cares about those who suffer. As the husband and father of a wife and daughter who have HD, that meant a lot to me.

Secondly, it showed the power of persistence. The pope is a busy guy. Sabine’s original appeal, over the course of seven months, was to get Pope Francis to meet during a private audience with one family from Latin America, a region that is dear to the pope, who was born in Argentina.

What eventually occurred was that approximately 1,700 people, including scientists, carers, doctors, and friends of people with HD, arrived from 25 countries. About 150 people, who either were afflicted with HD or were their family members, sat in the front row. For about an hour, Pope Francis met and greeted each of them.

And finally, the film inspired me. Sabine’s father, paternal uncle, half-brother, and brother all died from HD. He is gene-positive for it. As a journalist, his mission is personal: to use his communication skills to raise awareness about the disease, and the film is a fine example of that.

I am a journalist, too, and I am trying to use my storytelling skills to be an advocate for my family and for all those who deal with HD. The film served as a creative reminder of how a story shared from the heart can touch other people’s hearts. I aim to do the same in my journalistic work relating to HD.

At the end of the event, unbeknownst to the Vatican’s security officials, Sabine arranged for a band to play an upbeat song so that some of the HD-afflicted people and their families could dance on the stage that Pope Francis had just occupied. Sabine had not asked for permission to do this because, as he noted in the film, “There is no dancing … at an audience at the Vatican.”

One of the people the film follows, Maria, whose husband has Huntington’s and whose son has been bullied at school and in the community because of the stigma of HD, summed up the day as follows: “There were so many emotions. So to find myself with all these others, it was like being in a family. This is my family. We’re all together in the same battle.”

For all who are reading this, we are part of that same family, that same battle.

We suffer. We care. We cry.

We also dance together.

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Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.

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