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.)

Preparing for the meeting with Pope Francis, a heartening milestone in the Huntington’s disease movement

Ever since I received the electrifying invitation to meet Pope Francis I, my adrenaline has not stopped flowing.

I will be one of 50 credentialed guests at the historic May 18 papal audience with Huntington’s disease families at the Vatican.

After global HD activist and papal event organizer Charles Sabine called with the news on March 3, I immediately shifted my own advocacy into high gear.

That night I dreamt vividly of walking alongside the pope, the leader of the world’s 1.2 billion Catholics.

Over the next ten days, which coincided with my spring break at the University of San Diego (USD), I dropped everything – even exercise some days – to write a detailed post on the event (click here to read more).

Sabine and other organizers have christened it “HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America,” to involve families primarily from Argentina, Colombia, and Venezuela. The name means HD “Hidden No More” or “Oculta Nunca Más” in Spanish.

I have also helped coordinate efforts to include families and advocates from Brazil, which has the world’s fifth largest population and an estimated 20,000 HD patients. My wife Regina, who is from Brazil, and our daughter Bianca will accompany me to Rome. So far, about 30 Brazilians plan to participate, including my mother-in-law, who resides in Rio de Janeiro. The Brazilian advocates will also invite to the audience key Catholic bishops from their country.

Ty, #PopeFrancis!

On March 13, the day HDdennomore was officially announced, I shared the news with colleagues and administrators at USD, a Catholic institution that welcomes people of all faiths and emphasizes the quest for social justice.

“Because of the stigma associated with the disease, HD families often remain in the terrible and lonely ‘HD closet,’” I wrote in an e-mail. “With the pope's blessing and recognition, we can liberate HD sufferers from the shame and stigma and move on to finish the hard work of developing a cure!”

I later shared with them my tweet to Francis: “Ty, #PopeFrancis! Meeting #Huntingtonsdisease victims 5/18. End stigma, shame. #HDdennomore @HDdennomore http://bit.ly/2nnqAnR @Pontifex.”

At USD, the College of Arts and Sciences, the Department of History, and the Frances G. Harpst Center for Catholic Thought and Culture (CCTC) will back my trip.

On April 4, I briefly explained the significance of the papal audience during a CCTC-sponsored faculty-student roundtable on Catholic news. In September, I will give a public, CCTC-sponsored presentation on my trip and HD’s profound bioethical and faith-related implications.

I have also reached out to the Diocese of San Diego in the hopes of fostering collaboration with the San Diego Chapter of the Huntington’s Disease Society of America.

HD’s spiritual ramifications

As I write this article, I still can’t believe that I’m actually going to meet Pope Francis! I feel great personal satisfaction about meeting a person who wields both great religious and political influence – and who can bring unique, global attention to HD.

Many Catholics hope to at least see a pope in their lifetimes. In 1979, from a distance, I saw the highly charismatic Pope John Paul II during a speech he gave in New York City. In 1990, I attended a Catholic Church symposium in Rio featuring then Cardinal Joseph Ratzinger, the future Pope Benedict XVI.

This time, if all goes as planned, I will meet the pope in person.

In the coming weeks, I will contemplate what I want to tell Pope Francis.

As an introduction and sign of appreciation, I will give Francis copies of my two main books on the history of the Brazilian Church.

I’ll also be thinking about the long-term ramifications of this event for the HD cause, Catholicism, and human solidarity both in and out of the context of religious faith. As Francis himself stated recently, many Catholics act hypocritically, failing to follow the teachings of their faith. “How many times have we all heard people say ‘if that person is a Catholic, it is better to be an atheist,’” he said.

HD affects men, women, and children from all parts of the world. As a medical condition, it devastates with no correlation to any religion.

At the same time, the fight against HD clearly involves spiritual questions for which people hunger for answers.

Although blog viewership statistics can mean many things, those for this blog provide some interesting indicators of that hunger. Until my previous posting, on the papal audience, the all-time leading article was my 2010 piece titled “God, Huntington’s disease, and the meaning of life,” with more than 20,000 views – more than double the next most popular article, about the historic launching of the Ionis Pharmaceuticals, Inc., gene-silencing clinical trial in 2015.

In less than four weeks, the article on Francis has had more than 28,000 views.

I’ll revisit the theme of the HD movement’s spiritual dimension in future articles.

Remembering the HD warriors

Most importantly, in meeting Pope Francis I want to bear witness to my experience as “Gene Veritas,” the HD gene carrier who remained painfully hidden from public view for nearly two decades and lost his mother, Carol Serbin, to the disorder in 2006 at the age of 68.

I also want to recognize the valuable contributions of – and the need to increase support for – caregivers such as my father Paul Serbin, the “HD warrior” who daily looked after my mother during her nearly two-decade struggle. He died with a broken heart in 2009.

I’ve been channeling my parents a lot. I imagine them standing beside Regina, Bianca, and me, all of us smiling as we meet Francis. As devout Catholics, they would have been thrilled to meet him.

They’ll be there in spirit.

I will present Francis with a photo of my parents and ask him to pray for their souls.

Paul and Carol Serbin (family photo)

Ending shame and stigma

The HDdennomore organizers expect as many as 2,000 members of the HD community from around the globe to take part in the audience, and they hope for even more.

The event will take place in the Paul VI Audience Hall, just a few yards from St. Peter’s Basilica in Vatican City. It seats 7,000. The event starts at 10 a.m. Doors open at 8 a.m. All potential attendees should register at http://HDdennomore.com, which is providing updates via e-mail, Twitter, and Facebook.

The site also has videos featuring the South American families invited to meet the pope, as well as information about HD, discounted lodging, and other aspects of the event.

The organizers revealed that 15-year-old juvenile HD patient Brenda, a native of Buenos Aires, Francis’s birthplace, will hand a vellum scroll to the pope during the meeting. It will contain a pledge in English, Spanish, and Italian:

Huntington’s is a fatal genetic disease. It has no cure.

For too long, shame and stigma have afflicted HD families, forcing them to hide the illness to the detriment of the health, hope and dignity of those affected by the disease.

Nobody should feel shame about the existence of Huntington’s disease in their family.

It is time for Huntington’s to be HDdennomore!

Brenda and her aunt (personal photo) 

A time for joy

Huntington’s disease forces families to face a grim reality. Like so many other HD gene carriers and untested at-risk individuals, I saw my own future when looking into the genetic mirror represented by my mother’s condition.

HDdennomore will mark a milestone in the HD cause.

It will provide a stark contrast to the anguish felt by so many.

For the first time in my family’s long fight against HD, I feel joyful. I’ve smiled a lot about the fact that my family and I will meet Pope Francis.

More importantly, I’m thrilled that our HD community will receive recognition and new hope in its struggle to overcome the disease and assist scientists in the search for badly needed treatments.

Who knows? Perhaps Francis, through his kindness, wisdom, and faith, will help bring all HD families out of the terrible and lonely HD closet – and provide new momentum for the scientific progress necessary for the miracle of a cure.

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).