‘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 I to meet with victims of Huntington’s disease, a first for a world leader

In an unprecedented encounter, the first for any pope or world leader, Pope Francis I on May 18 will meet with Huntington’s disease sufferers at the Vatican, bringing new attention to this affliction.

The key papal guests will hail from Latin America, the pope’s home region, the area with the world’s most Catholics, and a key locus of the quest for the HD gene from the 1970s to the 1990s.

Several HD-affected HD individuals (with both juvenile and adult onset), three at-risk relatives, and other relatives and caregivers – a total of 16 people – will travel to Rome from Colombia, Venezuela, and Argentina, the pope’s birthplace.

The news was announced today via e-mail by an international coalition of patient advocates and organizations: "save the date for the largest global gathering of the Huntington's disease community!"

The coalition includes Elena Cattaneo, Ph.D., a prominent HD scientist and senator-for-life in Italy; Factor-H, a humanitarian project founded by HD researchers Claudia Perandones, M.D., Ph.D., and Ignacio Muñoz-Sanjuan, Ph.D.; global HD advocate Charles Sabine; and the Huntington’s Disease Society of America (HDSA).

Many physicians in Latin America laid the groundwork for the event through their long-term dedication to local HD communities and assistance in selecting the families.

The announcement comes, coincidentally, on the fourth anniversary of Francis’s election as the first pope from the Americas.

“What I want him to say, in some way, is that the disease should not be hidden anymore,” Sabine, an HD gene carrier, told me. “That’s the theme of the event: that people should not feel any shame or stigma about the disease.”

“This is a dream which has come true,” Dr. Perandones affirmed in a written response to questions about the event. “After working for nearly 20 years in Latin America in order to try to improve the quality of life of patients, and feeling so alone in this endeavor so many times, it seems unbelievable that the pope will receive us.”

Pope Francis I (above, photo by Argentine Presidency/Wikimedia) and the Soto family of Barranquitas, Venezuela, after receiving the invitation to the papal audience in Rome (below, photo courtesy of Dr. Ernesto Solis)

Putting HD on the global stage

The South American HD families will be joined by three dozen advocates and HD family members from other countries, including HDSA CEO Louise Vetter and leading American HD advocate Katie Moser, the 2010 HDSA Person of the Year. Latin American Catholic leaders will also take part.

“As a global leader, Pope Francis has the power to elevate the conversation about HD to an international stage with a call for compassion – and action,” Vetter said.

I was also invited to meet with the pope, because of my interlocking connections with the Catholic Church, Latin America, and HD advocacy. My mother died of HD, and I carry the genetic defect.

I am thrilled! I consider it a privilege and a responsibility to attend, and expect to bring my wife Regina and teenage daughter Bianca. We will represent the HD community in both the U.S. and Brazil, Regina’s homeland. At least three HD-affected individuals will attend from Brazil, according to advocates there.

(Portuguese speakers can watch my report in that language in the video at the end of this article.)

Help desperately needed

Scientists and advocates began discussing an appeal for the Church to help – and then a papal audience – in 2015.

Dr. Perandones, a clinical geneticist with the National Administration of Laboratories and Institutes of Health in Argentina, and Dr. Muñoz-Sanjuan, of Spain, a vice president at CHDI Foundation, Inc., the nonprofit virtual biotech dedicated solely to the development of HD treatments, first raised the idea of seeking Church support for Venezuela’s isolated HD people during a February 2015 CHDI conference. Talking with Sabine and Senator Cattaneo, Drs. Perandones and Muñoz-Sanjuan said that those families desperately needed help.

With aiding those people in mind, Sabine, a native of England, and Senator Cattaneo came up with idea for a papal audience in fall 2015 after Sabine saw a man with Parkinson’s disease have his picture taken with Francis and also learned the poignant story of an HD-affected teen from Buenos Aires. Sabine and the senator found no “reference anywhere by any pope to Huntington’s disease,” he explained.

Thanks to Cattaneo’s connections and the Vatican’s receptivity, they were able to schedule the papal audience. Now, Sabine says of the upcoming meeting, “It is perhaps one of the most historic moments in the history of the HD community.”

According to Sabine, it will mark the first time that any world leader, including a U.S. president, will meet with HD families.

Charles Sabine (above, photo by Gene Veritas, aka Kenneth P. Serbin) and Senator Elena Cattaneo (below, photo from Cattaneo Lab)

A major opportunity to overcome shame, stigma

Sabine, a former foreign correspondent for NBC News, has pursued activism since the mid-1990s, without being yet symptomatic. His father died of HD, and an older brother has the disease.

“I had spent a lot of time working for NBC at the Vatican,” he said. “I know that the pope is the hardest person on the planet to get to – much harder than the American president.”

By blessing and speaking to HD-afflicted families publicly, Francis can make a “profound difference” in combatting the shame and stigma surrounding HD, Sabine added.

“We want as much press on this as possible,” he continued. “We want to engage as many people as possible around the world, not just Catholics, to make this into a larger sum than the parts.”

“Furthermore, we hope this will lead to action, both by the Catholic Church, with its strong presence in Latin America, as well as from local and national institutions,” Dr. Muñoz-Sanjuan wrote in an e-mail.

The public event will take place in a 7,000-seat auditorium, where attendees can observe the pope’s interaction with the South American families and HD advocates. Event organizers want as many representatives as possible from the HD community to attend.

“Anyone can go,” Sabine emphasized. “They don’t even need to be HD-affected. They might just care about HD."

The announcement made today by the international HD coalition; click on image to view larger (photo courtesy of HDSA).

A humanitarian endeavor

The organizers also hope the meeting galvanizes the HD community worldwide. Members of groups such as the global Huntington’s Disease Youth Organization could meet beforehand and go to the event together, Sabine suggested. Other events in Rome will celebrate the unity of the HD movement and solidarity with the plight of Latin American HD communities.

All attendees are required to register on the event’s official website, HDdennomore.com, by May 5. The URL means “HD Hidden No More,” a theme of the papal event linked to Sabine’s previous awareness campaign in the UK Parliament.

The site will provide information on hotels, accommodations for special needs of the affected, and more.

Noting the “immense pressure” on Francis I from ultra-conservative Catholics because of his purported liberal stance, Sabine said that Senator Cattaneo and her staff have stressed the non-political nature of the HD event.

“It’s a humanitarian one,” he said. “It’s a pastoral event. This is about regarding people with compassion and humanity. This pope has shown humanitarian credentials unlike any other.”

South America’s HD-affected: deep struggles

The papal event builds on work by Factor-H, a small nonprofit organization, to improve the living conditions in the Lake Maracaibo region of Venezuela, and other sites where poor HD families cluster. Many HD families in the region live in dire conditions. In some clusters, many generations of intermarriage mean many families have passed on the genetic disease.

Maracaibo has played a key role in HD science. Columbia University scientist Nancy Wexler, Ph.D., started the search for the HD gene among Maracaibo HD families in the 1970s. In 1993, the HD gene was discovered. It was one of the first disease genes to be identified. This research

helped stimulate the Human Genome Project of the 1990s. Dr. Wexler also was invited to meet the pope, Sabine said.

“Poverty and disease are a terrible combination,” wrote Dr. Muñoz-Sanjuan, who has taken aid to Maracaibo and other communities. “Not everyone in Latin America with HD is poor. However, the main clusters in Venezuela and Colombia are very poor, and neglected. That’s why we are focusing on these clusters.”

“These are people living maybe in families of 16 in a space the size of an American garage on stilts on a lake,” Sabine observed. “No electricity. No running water. Nothing. It was so clear that there were so many people like the people at Lake Maracaibo who are affected by the disease and who have never had any kind of recognition from their respective governments or churches.”

Sabine said he hoped the Vatican event will empower Catholic HD families everywhere to seek assistance from their local clergy in raising awareness about HD and alleviating the social burden of the disease.

Dr. Ignacio Muñoz-Sanjuan (seated) with Colombian children at risk for HD (personal photo)

Preparing the logistics

Every HD family knows the extremely difficult challenge of travel for affected individuals, whose symptoms include constant involuntary movements, loss of balance, and cognitive decline. Many require wheelchairs.

To underwrite the cost of the enormously complex task of transporting the HD families to Rome, Sabine raised $100,000 from Israel-based Teva Pharmaceutical Industries Ltd. and $50,000 from the U.S.-based, HD-related Griffin Foundation.

Almost all of the South American travelers must get their first-ever passports, and in some cases even birth certificates.

The Vatican is helping to speed the acquisition of travel documents and to prepare special accommodations for the families, including lodging at a monastery near the Vatican instead of a hotel.

“We felt they would be more comfortable staying all together in a quiet and peaceful place,” Dr. Muñoz-Sanjuan noted. “We assumed that they will experience some culture shock and wanted for them to be at ease during their stay and make the experience more personable.”

Physicians will accompany the families.

A lonely HD teen in Buenos Aires

On January 6, the Feast of the Epiphany on the Catholic calendar (the day the Christ child was visited by three kings, according to the Bible), each of the South Americans received a red envelope from the Vatican with the invitation to meet with Francis. (Video recordings of these moments will become available at HDdennomore.com.)

One was 15-year-old Brenda, who lives in the greater Buenos Aires area, where Francis served as archbishop. She has juvenile HD, which has severely hampered her ability to speak and learn. She communicates mainly by texting on her cell phone.

“The children don’t play with her, so she’s very lonely,” Sabine said. “She has no friends, because they’re afraid of catching HD. The local school wouldn’t give her access to a laptop, because they said there’s not much point, because she doesn’t have long to live.”

“Brenda is my patient and I have a great affection to her,” Dr. Perandones wrote. “She is very clever and sensitive. We have a great connection.”

According to Dr. Perandones, Brenda and her father - from whom she inherited HD - lived with his sister, Brenda’s aunt, whom she calls “mom.”

“A major concern for the aunt at the time was the fact that Brenda and her father shared the bedroom, and his movements during the night scared Brenda a lot,” Dr. Perandones recalled in an e-mail to supporters about Brenda’s reaction to the papal invitation.

To lift the family’s spirits and improve their living situation, Drs. Perandones and Muñoz-Sanjuan raised funds to make a heartfelt “Christmas for Brenda.” That resulted in the remodeling of the aunt’s home, including a new room for Brenda, a full bathroom, and a recreational area.

“Regrettably, Brenda’s father’s health gradually deteriorated and last year, on the day Brenda turned 15, he passed away,” Dr. Perandones wrote. (For girls turning 15 in Latin America, the quinceañera is typically a joyous passage to womanhood.)

Brenda and her aunt (personal photo)

A turning point for HD community

Sabine said “Brenda’s Christmas” helped inspire the idea of a papal audience.

Dr. Perandones, who describes herself as “totally Catholic,” met Francis (then Archbishop Jorge Bergoglio) before his papal election through her support of a group advocating for victims of human trafficking in Argentina. He “always supported” this effort, she recalled in her written response to my questions.

“Many indigent individuals living in the streets of Buenos Aires have neurological and mental health conditions, including Huntington’s disease,” she added. “Bergoglio was interested in this issue and gave his support to start a Homeless Rescue Program."

Dr. Perandones hopes the meeting will make HD move visible and attune others to HD families’ regular difficulties and challenges.

“I think that the meeting with the pope will be a turning point for the HD community globally and particularly in Latin America,” she stated.

In addition to Brenda and her aunt, the papal invitees include HD families from the towns of San Luís and Barranquitas in Venezuela’s Maracaibo region and from the city of Medellín and the small town of El Difícil in Colombia.

Brenda flanked by Dr. Claudia Perandones and Academy Award winner Eugenio Zanetti, a supporter of the HD cause, after Brenda received news of the papal invitation (personal photo).

A testament to the world

Rooted in Christian love and compassion, Pope Francis’s meeting with the HD-affected of South America should reflect the Church’s historic mission of aiding the sick and defenseless. With 1.27 billion Catholics and hundreds of thousands of priests, nuns, and other personnel, the Church runs an enormous, vital network of charitable and social-service entities that could have a significant impact on HD.

With the biomedical revolution, the Church has sought to both apply and adapt its 2,000-year-old moral and theological tradition to today’s bioethical challenges.

The Huntington’s disease community stands on the bioethical frontier. HD families contribute to advances in neurological and rare-disease research, and they have pioneered ways of dealing with the impact of disease such as discrimination, disability, decisions about genetic testing, family unity, caregiving, suicide, and end-of-life care.

The May 18 meeting with Pope Francis will allow the HD community to provide a testament to the world of human perseverance and solidarity and, ultimately, the need to alleviate and cure devastating diseases.

“Those suffering with HD and living in extreme poverty need urgent help to lead a life of dignity and hope,” Dr. Ignacio Muñoz-Sanjuan asserted.

I hope that Francis’s Pope’s humanitarian gesture serves as a message to the church and to world opinion leaders to address the critical need of ameliorating Huntington’s disease.

Janeth Mosquera, of the Colombian HD patient association and Factor-H, hugs an HD man in the town of Choco in the Colombian jungle, April 2016, after delivering assistance (personal photo).