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.
