Fear Not, Huntington’S Illness Families – Pope Francis Has Our Backs
In simply a few hours, at a historic coming together at the Vatican, Pope Francis volition offering words of encouragement to the Huntington’s affliction community, aiming to brand this deadly, incurable neurological disorder “hidden no more.”
Francis is scheduled to brand it at the Paul VI Audience Hall, simply a few yards from St. Peter’s Basilica inwards Vatican City, at eleven a.m. Rome time.
The organizers of “HDdennomore, Pope Francis’s Special Audience amongst the Huntington’s Disease Community inwards Solidarity amongst South America,” possess got enlisted the pope’s leadership inwards removing the shame in addition to stigma associated amongst HD.
The consequence volition last streamed lived inwards English linguistic communication at www.HDdennomore.com in addition to on the Vatican’s YouTube channel, www.youtube.com/vatican. (There volition equally good last Vatican broadcasts inwards Italian, Portuguese, in addition to Spanish.)
A global meeting
The consequence volition focus peculiarly on iv impoverished hard disk families from Argentina, Colombia, in addition to Venezuela. They arrived inwards Rome on May xv in addition to possess got been touring the city, amongst some experiencing delights such equally H2O ice cream for the commencement time. The president of the Italian Senate gave the families a welcoming spoken communication inwards the Senate chamber.
More than thirty hard disk solid unit of measurement members possess got equally good arrived from Brazil.
Open to the entire hard disk community, HDdennomore has drawn advocates in addition to supporters from to a greater extent than than twenty countries.
Gene Veritas (aka Kenneth P. Serbin) inwards St. Peter's Square (family photo)
A commitment to the marginalized
I arrived inwards Rome amongst my solid unit of measurement belatedly on the nighttime of May 10, feeling non bad anticipation well-nigh the papal audience.
On the plane, I continued reading historian Austen Ivereigh’s biography of Francis, The Great Reformer: Francis in addition to the Making of a Radical Pope.
“Francis’s deep commitment to the piteous in addition to marginalized has increased my expectation that he volition elevator the spirits of the hard disk community in addition to assist pave the means for novel in addition to ameliorate ways of caring for the HD-stricken in addition to their families,” I reflected inwards a May eleven Facebook posting. “No affair what our faith, Francis’s words echo the combat of the hard disk community to aid for our loved ones in addition to to brand this affliction ‘hidden no more.’”
A graffiti artist's rendition of Pope Francis equally Superman (photo past times Gene Veritas)
Getting laid for the big moment
We arrived to a greater extent than than a calendar week earlier the audience inwards gild to larn acclimated to Rome in addition to to recover from the nine-hour jet lag betwixt San Diego in addition to Italy. I promise I’ve minimized the adventure to my brain.
HDdennomore volition start at the minute I would ordinarily last going to bed inwards California. Huntington’s affliction sufferers experience problems amongst their circadian rhythm, which regulates slumber in addition to other bodily functions. Researchers recommend that hard disk people in addition to fifty-fifty hard disk factor carriers similar me avoid jet lag in addition to travel to slumber around the same fourth dimension each night.
My married adult woman Regina, immature adult woman Bianca, in addition to I possess got spent constituent of the fourth dimension leisurely touring Rome, a bustling all the same highly welcoming metropolis amongst some of the world’s greatest artistic in addition to archeological treasures, a culinary paradise, and, of course, the topographic point of basis Catholicism. Regina's woman bring upward Lourdes has equally good joined us from Rio de Janeiro.
Now we’re getting laid for the big moment: nosotros volition come across Francis personally in addition to promise to portion amongst him our family’s hard disk struggles.
Regina Serbin (left), Bianca Serbin, Maria de Lourdes Alves Barros (Regina's mother), in addition to Gene Veritas at the Roman Forum (family photo)
Forging of import novel bonds
This afternoon I visited the Passionist fathers’ monastery, where the Argentine, Colombian, in addition to Venezuelan hard disk families are lodging, equally good equally some of the Brazilians.
After greetings in addition to introductions, I met amongst Associação Brasil Huntington (ABH) president Vita Aguiar de Oliveira in addition to several hard disk families to response questions well-nigh the historic Ionis Pharmaceuticals gene-silencing clinical trial. We discussed the hard challenges facing hard disk families such equally genetic testing.
We equally good began planning for ways to accept payoff of the “onda create papa,” the “papal wave” of publicity in addition to renewed advocacy hopefully to last initiated past times the audience amongst Francis.
One of the participants, Samila Cristina, pointed out the importance of a network of back upward inwards families’ efforts to larn by amongst HD. (Her solid unit of measurement won an ABH drawing that provided a patient in addition to caregiver amongst airfare to Rome.)
Indeed, later on the 90-minute encounter I felt equally if I had attended my local hard disk back upward grouping inwards San Diego: ane time once to a greater extent than I recalled the fact that I demeanour the deadly hard disk gene, but I equally good felt forcefulness from the novel bonds forged amongst these beau members of the extended hard disk family.
Afterwords Samila’s HD-afflicted woman bring upward Teresinha presented me amongst ii ABH/HDdennomore t-shirts.
Above, Gene Veritas (in greenish shirt) in addition to the Brazilian hard disk families at the Passionist fathers monastery. Below, Teresinha presents Gene Veritas amongst an ABH/HDdennomore t-shirt (personal photos).
Entering the spotlight, inspiring the world
As the minute approaches for the hard disk community to travel into the basis spotlight, it’s fourth dimension to overcome the fearfulness that has blocked our community from coping amongst in addition to finding the cure to HD.
“We confront a myriad of challenges, including genetic testing, solid unit of measurement planning, solid unit of measurement tensions, shame, the devastating symptoms, in addition to the huge caregiving burden,” I wrote inwards a May xv Facebook posting. “Be non afraid! Pope Francis has our backs! hard disk must last ‘hidden no more!’”
With in addition to thence many unable to attend because of the distance, cost, in addition to challenges of HD, I am enormously privileged to possess got been invited to the audience.
On Facebook, I equally good recalled how another, non-HD-related wellness crisis inwards our solid unit of measurement inwards belatedly Apr nearly led me to cancel our trip.
As that crisis was successfully resolved, I was reminded of the many other people suffering from hard diseases, including genetic disorders. My solid unit of measurement in addition to I volition accept a little religious keepsake to the papal audience for the friend of a friend inwards the U.S., a immature adult woman who suffers from two rare genetic disorders.
Indeed, I promise that Pope Francis’s gesture to the Huntington’s community tin hand notice inspire those suffering from all diseases to strive for a basis where aid in addition to cure trump stigma and, maybe fifty-fifty worse, indifference.
(My trip to Rome was made possible past times the College of Arts in addition to Sciences, the Frances G. Harpst Center for Catholic Thought in addition to Culture, the International Center, in addition to the Department of History of the University of San Diego. I am grateful for the institutional in addition to moral back upward of my colleagues in addition to students.)
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