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.)

Fear not, Huntington’s disease families – Pope Francis has our backs

In just a few hours, at a historic meeting at the Vatican, Pope Francis will offer words of encouragement to the Huntington’s disease community, aiming to make this deadly, incurable neurological disorder “hidden no more.”

Francis is scheduled to arrive at the Paul VI Audience Hall, just a few yards from St. Peter’s Basilica in Vatican City, at 11 a.m. Rome time.

The organizers of “HDdennomore, Pope Francis’s Special Audience with the Huntington’s Disease Community in Solidarity with South America,” have enlisted the pope’s leadership in removing the shame and stigma associated with HD.

The event will be streamed lived in English at www.HDdennomore.com and on the Vatican’s YouTube channel, www.youtube.com/vatican. (There will also be Vatican broadcasts in Italian, Portuguese, and Spanish.)

(Click here and here for background and details of the event).

A global meeting

The event will focus especially on four impoverished HD families from Argentina, Colombia, and Venezuela. They arrived in Rome on May 15 and have been touring the city, with some experiencing delights such as ice cream for the first time. The president of the Italian Senate gave the families a welcoming speech in the Senate chamber.

More than 30 HD family members have also arrived from Brazil.

Open to the entire HD community, HDdennomore has drawn advocates and supporters from more than 20 countries.

Gene Veritas (aka Kenneth P. Serbin) in St. Peter's Square (family photo)

A commitment to the marginalized

I arrived in Rome with my family late on the night of May 10, feeling great anticipation about the papal audience.

On the plane, I continued reading historian Austen Ivereigh’s biography of Francis, The Great Reformer: Francis and the Making of a Radical Pope.

“Francis’s deep commitment to the poor and marginalized has increased my expectation that he will lift the spirits of the HD community and help pave the way for new and better ways of caring for the HD-stricken and their families,” I reflected in a May 11 Facebook posting. “No matter what our faith, Francis’s words echo the struggle of the HD community to care for our loved ones and to make this disease ‘hidden no more.’”

A graffiti artist's rendition of Pope Francis as Superman (photo by Gene Veritas)

Getting ready for the big moment

We arrived more than a week before the audience in order to become acclimated to Rome and to recover from the nine-hour jet lag between San Diego and Italy. I hope I’ve minimized the risk to my brain.

HDdennomore will start at the moment I would normally be going to bed in California. Huntington’s disease sufferers experience problems with their circadian rhythm, which regulates sleep and other bodily functions. Researchers recommend that HD people and even HD gene carriers like me avoid jet lag and go to sleep around the same time each night.

My wife Regina, daughter Bianca, and I have spent part of the time leisurely touring Rome, a bustling yet highly welcoming city with some of the world’s greatest artistic and archeological treasures, a culinary paradise, and, of course, the seat of world Catholicism. Regina's mother Lourdes has also joined us from Rio de Janeiro.

Now we’re getting ready for the big moment: we will meet Francis personally and hope to share with him our family’s HD struggles.

Regina Serbin (left), Bianca Serbin, Maria de Lourdes Alves Barros (Regina's mother), and Gene Veritas at the Roman Forum (family photo)

Forging important new bonds

This afternoon I visited the Passionist fathers’ monastery, where the Argentine, Colombian, and Venezuelan HD families are lodging, as well as some of the Brazilians.

After greetings and introductions, I met with Associação Brasil Huntington (ABH) president Vita Aguiar de Oliveira and several HD families to answer questions about the historic Ionis Pharmaceuticals gene-silencing clinical trial. We discussed the difficult challenges facing HD families such as genetic testing.

We also began planning for ways to take advantage of the “onda do papa,” the “papal wave” of publicity and renewed advocacy hopefully to be initiated by the audience with Francis.

One of the participants, Samila Cristina, pointed out the importance of a network of support in families’ efforts to cope with HD. (Her family won an ABH drawing that provided a patient and caregiver with airfare to Rome.)

Indeed, after the 90-minute encounter I felt as if I had attended my local HD support group in San Diego: once again I recalled the fact that I carry the deadly HD gene, but I also felt strength from the new bonds forged with these fellow members of the extended HD family.

Afterwords Samila’s HD-afflicted mother Teresinha presented me with two ABH/HDdennomore t-shirts.

Above, Gene Veritas (in green shirt) and the Brazilian HD families at the Passionist fathers monastery. Below, Teresinha presents Gene Veritas with an ABH/HDdennomore t-shirt (personal photos).

Entering the spotlight, inspiring the world

As the moment approaches for the HD community to enter the world spotlight, it’s time to overcome the fear that has blocked our community from coping with and finding the cure to HD.

“We face a myriad of challenges, including genetic testing, family planning, family tensions, shame, the devastating symptoms, and the huge caregiving burden,” I wrote in a May 15 Facebook posting. “Be not afraid! Pope Francis has our backs! HD must be ‘hidden no more!’”

With so many unable to attend because of the distance, cost, and challenges of HD, I am enormously privileged to have been invited to the audience.

On Facebook, I also recalled how another, non-HD-related health crisis in our family in late April nearly led me to cancel our trip.

As that crisis was successfully resolved, I was reminded of the many other people suffering from difficult diseases, including genetic disorders. My family and I will take a small religious keepsake to the papal audience for the friend of a friend in the U.S., a young woman who suffers from two rare genetic disorders.

Indeed, I hope that Pope Francis’s gesture to the Huntington’s community can inspire those suffering from all diseases to strive for a world where care and cure trump stigma and, perhaps even worse, indifference.

(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.)