In the fight to defeat
Huntington’s disease and other brain disorders, advocacy in the workplace can attract
new allies, boost awareness, and serve as a bridge to resources for those
facing HD.
November 4 will
mark five years since I went public about my gene-positive HD status in my
essay “Racing Against the Genetic Clock,” published in The Chronicle of Higher Education.
Before that day
in 2012, I lived in the “terrible and lonely HD closet,” with virtually nobody
outside the HD community, family, and close friends aware of my family’s
struggles. My name appeared nowhere in the local, tri-annual HD newsletter that
I wrote and edited from 2001-2007. I began this blog in 2005 with a pseudonym,
“Gene Veritas,” “the truth in my genes,” a reflection of my status as an
HD-gene carrier.
Starting with
the Chronicle article, I have integrated
my advocacy into my work as a professor at the University of San Diego (USD).
Bioethical challenges
In 2014, I
started collaborating with Laura Rivard, Ph.D., an adjunct professor in the USD
Department of Biology who teaches a course on bioethics. One of her students,
Nazin Sedehi, recorded a video interview of me recalling my family’s experiences
with genetic testing for two websites aimed at helping a general audience explore
bioethical dilemmas.
I’ve spoken on
HD to Dr. Rivard’s class three times. In February 2016, I gave a presentation
titled “Huntington’s Disease and Bioethics: A Personal Case Study.” The talk
focused on how advances in medicine and biotechnology have provided new tools
for understanding both human biology and the situation of HD-affected
individuals and families.
“These changes –
these huge transformations that we’ve been going through scientifically and
socially – have put people in unprecedented predicaments and thus, they are
creating new bioethical challenges,” I stated. I reflected on how HD families
faced decisions about predictive testing, family planning, abortion, suicide, euthanasia,
and more.
You can watch my
presentation in the video below. During the other class sessions, I provided
commentary and answered questions after we watched the HBO documentary The Lion’s Mouth Opens, about young filmmaker-actress Marianna
Palka’s decision to get tested for HD.
‘You are precious’
My advocacy
reached a milestone in May, when I traveled with my family to Rome to help
represent the U.S. HD community at HDdennomore: Pope Francis’ Special Audience
with the Huntington’s Disease Community in Solidarity with South America. I
reported on the audience in several blog posts (click here to read one example).
My trip was made
possible by USD’s College of Arts and Sciences, the Frances G. Harpst Center
for Catholic Thought and Culture (CCTC), the International Center, and the
Department of History. Back home, on September 28 I gave a talk exploring the social,
scientific, and religious meaning of this extraordinary event. Some 60
students, faculty, and members of the San Diego HD community attended.
In one of the
most emotional speeches I have given, I repeated the words of Francis’ address
that most moved me:
For Jesus, disease is never an obstacle
to encountering people, but rather, the contrary. He taught us that the human
person is always precious, always endowed with a dignity that nothing and no
one can erase, not even disease. Fragility is not an ill. And disease, which is
an expression of fragility, cannot and must not make us forget that in the eyes
of God our value is always priceless. Disease can also be an opportunity for
encounter, for sharing, for solidarity. The sick people who encountered Jesus
were restored above all by this awareness. They felt they were listened to,
respected, loved. May none of you ever feel you are alone; may none of you feel
you are a burden; may no one feel the need to run away. You are precious in the
eyes of God; you are precious in the eyes of the Church!
I told the
audience: “I saw HD turn my mother into a shadow of herself. I deeply fear
losing my ability to speak and, especially, to write. Hearing that we HD people
are ‘precious’ was a huge morale booster.”
I hope that my
presentation raises awareness about HD in the U.S. Catholic community and
beyond, and helps spur at-risk individuals and others to exit the HD closet and
join the movement.
You
can watch the speech in the video below, recorded and edited by Scott Lundergan of USD media services.
'Hidden No More': Pope Francis' Historic Audience with the Huntington's Disease Community from Gene Veritas on Vimeo.
Warning about football’s
dangers
On October 17,
another dimension of my workplace advocacy – the effort to raise awareness at
the university about the dangers of tackle football – reached a crescendo. A
resolution to ban football at USD, proposed by Daniel Sheehan, Ph.D., Nadav
Goldschmied, Ph.D., and me, was voted on in the Academic Assembly of the
College of Arts and Sciences.
USD football is
a non-scholarship sport, so its profile is not as high as at some campuses, but
it has fervent fans among students, alumni, and even faculty. At a USD Faculty
Senate meeting last December, President James T. Harris III, D.Ed., reaffirmed his opposition to cancelling the program because, in his words, “no
universities have closed their football program […] because of concussion evidence yet.”
In the weeks
leading up to the meeting, I remembered Pope Francis’ encouragement. I also
frequently recalled my mother’s struggle with HD and my father, the “HD
warrior” who cared for her for more than a decade.
Our resolution
focused on the scientific evidence about football’s threat to the brain,
especially the disease known as CTE (chronic traumatic encephalopathy), first
seen in boxers in the 1920s and, over the past ten years, identified in the
autopsies of an increasing number of National Football League, college, and
high school players. We cited the publication in July of an article in the Journal of the American Medical Association documenting
CTE in 110 of 111 autopsies of decease NFL players. (For the resolution’s
rationale, please click here).
CTE produces
symptoms similar to HD and other neurological diseases such as aggressiveness
and cognitive loss.
However, many
faculty members defended the football program because of virtues such as
character-building. Surprisingly, this group included biologists and other
natural science specialists.
After one of the
most heated faculty debates I have witnessed in 25 years at USD, the motion
lost, 50-26. However, 30 professors abstained – reflecting perhaps discomfort
about offending their colleagues and/or indecision on the matter.
As a brain
health advocate, I was disturbed by the vote. In an upcoming article, I will
explore the USD debate in detail, in particular how it shows how scientific
evidence is often ignored or manipulated in critical debates, and what this
means for the HD and other disease communities.
Immediately
after the assembly, I met with about 70 members of USD’s chapter of Phi Delta
Epsilon, the co-ed pre-medical fraternity, to speak on HD and the papal audience. I
urged them, as future members of the health professions, to be aware of CTE and
to safeguard the well-being of football players. I also defended the continued inclusion
in our health system of those with pre-existing conditions like me who in the
past often hid their potential illnesses.
Fraternity
president Nicholas DiChristofano pledged that the organization would support
the HD community.
A student stands up for her
family
As a result of
my public stance, USD faculty members, students, and former students have
supported the cause with generous donations and participation in the annual
Team Hope Walk of the San Diego Chapter of the Huntington’s Disease Society of
America (HDSA). Many read this blog.
The Serbin Family Team of the 2014 HDSA-San Diego Team Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Prof. Yi Sun (of the USD History Department), Gene Veritas (aka Kenneth P. Serbin), Regina Serbin, and Allan Rappoport (photo by Bob Walker)
Through
my advocacy, I can connect people to HDSA’s resources.
At
day’s end on October 17, I met with Sydney Smyer, a 19-year-old USD biology
major.
On October 3,
Sydney had sent me the following email, quoted here with her permission:
My name is Sydney Smyer. I am a student
here at USD and I attended your talk on Huntington’s disease and the explanation of
His Holiness, Pope Francis’ involvement in the Huntington’s disease community.
I was quite moved and enlightened, Dr. Serbin. Huntington’s disease runs in my
family. My grandfather died from it as well as his father and three of his
brothers. His remaining brother has recently been diagnosed with Huntington’s
disease. Soon I will be tested, especially because my mother refuses to be
tested and my uncle has been showing symptoms for some years now. I think your
words would enlighten my family and bring them to the fullness and
understanding that is comforting in so much uncertainty for our family members.
Sydney, whose
family is Catholic, will share my #HDdennomore video with her family. They have
an extremely rare disease known as HDL1, Huntington’s disease-like syndrome, a
genetic disorder producing HD-like symptoms.
Sydney and I
talked for almost an hour about our journeys with HD. Though I mentioned my own
past fears about my HD status jeopardizing my career and insurance, Sydney was
adamant about facing HDL1 openly and standing up for her family.
She accepted my
invitation to the October 30 meeting of the HDSA-San Diego support group,
featuring the highly popular annual HD research update by Jody Corey-Bloom,
M.D., Ph.D., the director of the local HDSA Center of Excellence for Family
Services and Research.
Stepping forward
To me, there is
no more important work in the HD community than the mutual assistance we
provide at the support group.
When I exited
the HD closet five years ago, I did not imagine that one day a USD student
would join our group.
I am grateful to
USD and my colleagues for their support as the HD community seeks a treatment
for this incurable disorder.
As
a professor, I have the privilege of melding my academic work with advocacy.
However, many of
us in the HD community have unique skills and positions with the potential for
building bridges to our employers and others we associate with on personal and
professional levels. Doing so can reap many unexpected benefits.
Sydney's courage should inspire us all to step forward.
