A proud Huntington’s disease gene carrier’s message to his ‘miracle baby’ daughter on her senior year in college

 

When I tested positive for the Huntington’s disease genetic mutation in 1999, at 39, I was convinced I was doomed to repeat my HD-stricken mother’s onset of symptoms in her late 40s.

 

I had tested because my wife Regina and I wanted to plan for children, who, if I had the mutation, would also have a 50-50 chance of inheriting it.

 

We decided to have a child before the availability of preimplantation genetic diagnosis (PGD), which involves in vitro fertilization of embryos without the mutation. So, we had our daughter Bianca tested in the womb. Her negative result in early 2000 was one of the happiest moments of our life. She was our “miracle baby.”

 

Now, 21 years later, Bianca has started her senior year at the University of Pennsylvania, where she is finishing a U.S. history honors thesis. She has flourished in her classes and successfully taken on several leadership roles.

 

Bianca understood from about the age of two that her grandmother was ill with a genetic disease. HD transformed my mother into a mere physical and mental shadow of herself, taking her life at 68 in 2006. Four years later, when Bianca was 9, she learned that I, too, was at risk but that she was not.

 

I have been extremely lucky. I am almost 62 and was found to have no HD symptoms at my recent annual neurological checkup. I have perhaps benefited from the positive action of modifier genes and a far greater opportunity than my mother had – we had never heard of HD prior to her diagnosis – to prepare for the disease.

 

As Bianca navigates the challenges of senior year and prepares for post-college life, I want to provide her with a message of hope, challenge, and some of the wisdom I have picked up along my own life’s journey, including our family’s struggle against Huntington’s. My letter to Bianca follows after the photo below.

 

Regina Serbin (left), Gene Veritas (aka Kenneth P. Serbin), and Bianca Serbin at the Edge sky deck during a visit to New York City in August 2021 to celebrate Bianca's 21st birthday (photo by Devon Riley)

 

Dearest Bianca,

 

When you graduate next May, you and your classmates will come of age at a time of immense challenges.

 

I am impressed with how you (and so many other students of all levels) have shown great fortitude and flexibility when forced into the new reality of online learning and social distancing during the monumental disruptions of the COVID-19 crisis.

 

I was happy to see that this semester Penn has moved students back into the classroom, allowing you to recover some of the lost joy of the college years.

 

With the rapid development of highly effective RNA-based vaccines, many of us are reaping the fruits of the biotechnological breakthroughs of our era. Researchers are also exploring a variety of such genetics-based approaches as potential Huntington’s treatments. Because many of these advances promise to change our very nature, they will pose ethical dilemmas.

 

Our family has lived this in the flesh. The biomedical revolution made it possible for you to know your life will be free of Huntington’s. However, as you have learned, being HD-free does not mean being challenge-free. Far from it!

 

But the freedom from HD has enabled you to plan a life in which you can strive for academic and professional excellence, and to develop your personal qualities.

 

As you venture forth, remember always that you’re not going it alone. You can rely on others, just as you should be available to support others. Life is a collective endeavor, as our family has learned so well from the fight against HD. As I always tell people dealing with the initial shock of discovering Huntington’s in their families, “together we will beat this disease!”

 

In your drive for personal success, cherish the preciousness of time, as I have learned to do in confronting the fears of HD. Use ambition to push ahead, but don’t let it dominate your inner good. Always make time for family and friends.

 

Take time to meditate and cultivate your spirituality, because I believe that we all have such a dimension, independent of any belief system or organized religion. As you have done at Penn, find ways in your life to connect to something larger than you.

 

Bianca, I’m elated with how we have come to share many passions: for writing, the study of history, historical movies (especially war films), music, our dog Lenny, and our family.

 

Because of HD, your grandmother could barely hold you as a baby. Your “HD warrior” caregiver grandfather loved you deeply. I wish they could have shared your college years.

 

I have not wanted you to worry about me getting HD, which is a major reason that I have strived so hard to maintain good health – and to support the search for treatments that could save me from HD’s inevitable though often unpredictable symptoms.

 

You and Mom have joined me at Hope Walks and other fundraisers, and in 2017 you gave up the chance to attend your junior prom to take part in Pope Francis’ special audience with the HD community in Rome. I so deeply appreciated having you by my side during that breathtaking moment.

 

I am thrilled and thankful to have the clarity of mind to enjoy your progress towards graduation. You have made me deeply proud.

 

Because of our and so many other families’ dedication to the HD cause, and also thanks to the researchers, I remain ever hopeful for an HD treatment in my lifetime. If that moment comes, I know that no matter where you are geographically and professionally, we will celebrate with tears of joy.

 

I hope HD strikes me minimally and very late in life, as I have seen in some cases. Together our family has seen many people with HD fight tremendously to overcome the disease, and their caregivers devote every ounce of strength. As it has throughout our journey, the hope for both my good health and the arrival of treatments will continue to sustain us ­– even beyond the start of any symptoms that might occur.

 

No matter what difficulty, please remember that I have always treasured our great moments together and watching you grow as a person.

 

No one knows what tomorrow will bring. In this moment, let’s cherish the positive, including the fact that you, Mom, and I are healthy. As your senior year progresses, I want to celebrate our joy together as you prepare to graduate.

 

Raising you has brought Mom and me greater meaning and purpose – and, above all, lots of love to share.

 

Healthy and ambitious, you are poised, with your generation, to leave your mark on the world.

 

Congratulations on your senior year! Enjoy the ride!

 

Love,

 

Dad

 

 

 

The Serbin Family Team of the Huntington's Disease Society of America San Diego Chapter's  2014 Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Yi Sun, Kenneth Serbin, Regina Serbin, and Allan Rappoport (photo by Bob Walker)

My arduous, lucky, and enlightening journey since my mother’s death from Huntington’s disease 15 years ago

 

February 13, 2021, will mark fifteen years since my mother Carol Serbin died in 2006 after a two-decade fight against Huntington’s disease. She was 68.

 

Recalling her struggles and taking stock of my own predicament as an HD gene carrier have stirred me to reflect on my arduous, lucky, and enlightening journey since her death. Greater maturity and experience have also afforded me a deeper perspective on the HD cause as a whole.

 

My mother was diagnosed with HD in 1995, just two years after the discovery of the huntingtin gene. That breakthrough permitted the development of a genetic test confirming passage of the disease from one generation to the next. However, in retrospect, her symptoms probably had begun in the late 1980s, when she was in her late 40s.

 

The arduous years

 

Given Carol’s inexorable physical, cognitive, and emotional decline and the lack of treatments, in July 2005 my “HD warrior” caregiver father Paul Serbin sadly concluded that she needed 24/7 care in a nursing home.

 

Her move to the nursing facility greatly eased the caregiving burden on my father, although he faithfully visited her daily, still spoon-feeding her as he had done at home.

 

It also freed him to travel from their home state of Ohio to spend Thanksgiving of 2005 with my wife Regina, our five-year-old daughter Bianca, and me at our place in San Diego.

 

“I didn’t know how much I loved your mother until these past few years, taking care of her and seeing how much she has lost,” my usually stoic father confided in me.

 

Paul Serbin pushing Carol Serbin in wheelchair (photo by Gene Veritas, aka Kenneth P. Serbin)

 

From my standpoint, my mother was descending into an HD hell. Psychologically, this became the roughest period of my life. Not only was she was dying. I, too, had tested positive for the HD gene in 1999, so watching her decline was like “looking into the genetic mirror” that reflected my own future.

 

After my mother steadily lost the ability to swallow, in January 2006 I helped my father make the wrenching decision not to approve a feeding tube, which would at best have prolonged her physical life but left her bedridden, unable to communicate.

 

On the weekend of January 28-29, 2006, with my mother in hospice care at the nursing home, I flew to Ohio to visit her for what I knew could be the last time. With almost indescribable emotion, I said good-bye to my mother and, once again, gazed into the genetic mirror. This time it revealed a practically lifeless individual, barely able to move and unable to speak (click here to read more).

 

After that visit, and then learning that she had died in her sleep the morning of Monday, February 13, 2006, I felt utterly distraught about my gene-positive status.

 

In the months after her passing, I felt so terrified about getting HD that I began to act out some of the disease’s physical symptoms in front of my wife and daughter. I could not write anything in this blog for eight months.

 

My father, suffering his own severe cognitive loss likely accelerated by the loss of his wife, died on September 25, 2009, with a broken heart.

 

Tons of luck, and some positive strategies

 

I have now been without parents so long that memories of them feel like a distant past.

 

At 61, still without any apparent symptoms of HD, I feel extremely lucky. Each moment of good health is a blessing.

 

I have practiced personal and social enrichment, which scientists have recommended.

 

I have the benefit of a stable, good-paying job. Also, as the centrality of my parents faded, my roles as husband and father became paramount. Bianca became the center of our lives. Regina’s and Bianca’s love and support have proved crucial.

 

Also, because Bianca tested negative for HD in the womb, we have averted enormous health, financial, and psychological burdens (click here to read more).

 

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, Yi Sun, Kenneth Serbin, Regina Serbin, and Allan Rappoport (photo by Bob Walker)

 

I also exercise regularly, meditate daily, take medications to control depression and anxiety, and have a solid, long-term relationship with a psychotherapist.

 

I cannot be sure whether any of these things have staved off HD, but they generally bolster health.

 

Significantly, scientists have discovered very powerful explanations for why I am might have stayed asymptomatic so long: genetic factors, including modifier genes, that delay disease onset.

 

Gaining enlightenment about HD

 

Becoming enlightened about HD research and building bonds with scientists have reinforced both my advocacy and personal enrichment.

 

As a college professor, HD advocate, and explainer of the science ­– both in this blog and in interviews with researchers – I have had a privileged window on the quest for treatments. I have thoroughly enjoyed this work.

 

Moreover, I have gained great satisfaction in encouraging HD families to participate in research studies, platforms like Enroll-HD, and clinical trials.

 

Witnessing the progress towards treatments has also boosted my hope to participate someday in an HD clinical trial and, ultimately, enjoy the benefits of the first wave of effective treatments.

 

Overall, I believe that becoming enlightened about HD has helped me become a better person.

 

Pride

 

My devout Catholic parents – when I was a child, my father especially had hoped that I would become a priest – would have been especially proud of my family’s participation in #HDdennomore, Pope Francis’ special audience with the Huntington’s community in Rome in May 2017.

 

The pope declared HD to be “hidden no more” from the world.

 

I presented Pope Francis with a framed photo of my parents, well-dressed and smiling in a formal pose, taken after my mother had already been diagnosed with HD.

 

“My mother died of Huntington’s,” I told the Pope in his native tongue of Spanish. “My father cared for her for 20 years.”

 

In September 2017, I gave a presentation on #HDdennomore at my workplace, the University of San Diego. In February 2020, just before the COVID-19 crisis hit, I organized a screening of the poignant documentary on the papal audience, Dancing at the Vatican. It was well-attended by members of the local HD community.

 

Pope Francis displayed great love and mercy for our community.

 

Photo of Paul and Carol Serbin presented to Pope Francis by Kenneth Serbin, May 18, 2017. Photo taken shortly after Carol's diagnosis for Huntington's disease in 1995 (family photo).

 

Tributes, and imagining a world without HD

 

In many ways, since its inception sixteen years ago in January 2005, this blog has paid tribute to my parents. I have also honored the lives of other HD-affected people who valiantly fought against the disease such as Steve Topper and Harriet Hartl.

 

In these years since my mother’s departure, I have often wondered what our lives would have been like without the scourge of HD. This April 30, my mother would have turned 84 – within a plausible lifespan nowadays.

 

How wonderful it would have been had my mother – who could not interact with Bianca as a baby and toddler – been able to see her granddaughter reach college and to see Regina and me next year mark 30 years of marriage.

 

I can forge the greatest of tributes to my parents by continuing to nurture my health and hopefully secure a longer life so that I can grow old with Regina and see Bianca go out into the world.

 

When we learned of my mother’s diagnosis in 1995, there was no real hope of an HD treatment. However, since her death, research and the advent of clinical trials have brought unprecedented hope. As we’ve seen in response to the coronavirus pandemic, science can make great strides.

 

In unison with others, I can honor my parents by renewing the fight for Huntington's treatments so that thousands of families around the world can be freed from witnessing loved ones die early deaths.

In times of crisis, Huntington’s and other chronic disease communities provide examples of fortitude

For individuals and families facing Huntington’s and other chronic diseases, daily living often seems like nonstop crisis. These communities, including selfless caregivers, have demonstrated great fortitude.

The current coronavirus pandemic adds another giant, unknown layer to the kind of challenges and suffering many in these communities are already accustomed to.

The country’s reaction to the pandemic and the shutdown of daily routines starkly reminded me of the national climate in the months following the September 11, 2001, terrorist attacks on New York City and Washington, D.C. Resulting in 3,000 deaths, 9/11 led to a temporary grounding of all domestic flights, the fear of subsequent attacks (including nuclear), and panic regarding other, unrelated terrorist threats such as the deliberate spread of highly dangerous anthrax bacteria. The economy also suffered serious long-term effects.

Members of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA), in the bewildering days after 9/11, held a previously planned fundraiser and got ready to hold its first Celebration of Hope Gala.

With so many other, urgent demands on potential donors, we feared people might not remember our needs.

Later that fall, in an editorial in Conquest, our chapter newsletter, I wrote the following:

On September 20, less than two weeks after the crisis, members of the public and local organizations participated in the Third Annual Indy Go-Kart Challenge to raise funds for the cure of HD. Then, on October 11, the one-month anniversary of the attack, several hundred San Diegans took part in the Celebration of Hope Dinner to assist the Center of Excellence for Family Services and Research at the University of California, San Diego. We raised tens of thousands of dollars at these events. Elsewhere in the country other HDSA events went on as planned.

In this manner HDSA and its supporters have sent a resounding message that generosity and compassion are far stronger than the hateful politics of terror. We will move ahead, no matter what the odds are against us. This is the American spirit.

Unprecedented impact on daily life

So far, the coronavirus pandemic has had an unprecedented impact on the United States, with schools, universities, and many other institutions closing or switching to remote, online operations. As of March 15, at least 65 people had died in the U.S., with worst-case scenarios projecting 200,000 to 1.7 million deaths.

The pandemic has changed my workplace unlike any earlier tragedy. After 9/11, no classes were cancelled by my employer, the University of San Diego (USD). In 2003, the devastating Cedar Fire in San Diego County left 15 dead, destroyed 2,820 buildings, and charred more than 280,000 acres. In response, USD shut down for just two weeks and finished the semester normally, with everybody back on campus.

Now, because of the virus, USD has cancelled classes this week and will finish the semester (eight more weeks, plus final exams) online. The University of Pennsylvania, where my HD-free daughter Bianca studies, will do the same. My wife and I are worried that Bianca will not be able to make it home in time before potential travel restrictions.

Each hour, we learn of more victims of the virus and further curtailment of life as we know it.

Impact on the HD community

The global crisis has also impacted the mission of HDSA and individual HD families.

On March 13, HDSA CEO Louise Vetter sent an e-mail to “friends of HDSA” announcing that the organization “holds the well-being of our families, volunteers and staff as our top priority” and will therefore postpone “ALL local HDSA events (educational & fundraising) nationwide” until April 30. That complies with public health recommendations to curtail public gatherings to slow the spread of the coronavirus.

According to Vetter, HDSA still plans to hold its 35th Annual Convention in New Orleans, June 4-6, but will continue to follow the guidance from the Centers for Disease Control, World Health Organization, and state and local health agencies.

HDSA’s national headquarters in New York City is closed. However, the entire staff is working remotely and has the resources “to continue the uninterrupted support of our mission during this time,” Vetter assured.

The Huntington’s Disease Youth Organization postponed its May 2020 international congress in Glasgow, Scotland, to March 2021.

I have accepted an invitation to deliver the keynote address at the 37th National Conference of the Huntington Society of Canada in November, but have been told to hold off on reserving flights until the pandemic’s long-term effects become clear.

Visiting the afflicted

For one HD community member and blogger, Mandi, 33, the pandemic meant that on March 12 she could not visit her 58-year-old HD-stricken father, Danny, at the Missouri nursing home where he resides.

“They are locking all doors for the safety of people there,” wrote Mandi, a dedicated caregiver and herself at risk, but untested, for HD. “Was my first reaction sad I couldn’t see my dad? Sure, but I immediately checked myself. I realized my own selfish want to see my dad was tiny in comparison to keeping the people in the nursing home safe because who knew if I was a carrier since you can have it for over a week and not show symptoms.”

Mandi pointed out how the nursing home’s restriction is “terrifying for those of us with possibilities of losing family.” She wants “to do everything in my power to protect him as I always have.”

However, she concluded: “Until we really know what we are dealing with let’s just take the precautions seriously.”

Danny (left) and Mandi (family photo)

Especially resilient

With the coronavirus pandemic, the world can learn from the example of the HD community and our generous supporters.

We in the HD community, and other neurological disease groups, face relentless adversity. HD grinds down the brain, leaving the affected like my late mother unable to walk, talk, or care for themselves. Caregivers like Mandi and my late father are true “HD warriors.” 

However, because of this, we have developed a very realistic view of life.

“We are all in a race to death, but people at risk for life-shortening diseases know that their time to the finish line is painfully fast and troubled,” I wrote in 2009 in an article titled “HD: hurtling towards death.”

At the same time, we also have a special appreciation for the “preciousness of life.”

Confronting HD makes us especially resilient. I am hopeful that the HD community will successfully meet the challenges of the coronavirus pandemic and, as in facing past challenges, become even stronger.

Comedian Rod Man’s heartfelt speech, Ramona Johnston’s death remind us of urgent need to cure Huntington’s disease

In his raw, heartfelt speech in February about the devastation of Huntington’s disease in his extended family, comedian Rod “Rod Man” Thompson reminded his audience of the HD community’s urgent need for help: “We’ve got to find a cure. Any disease: you want to kick his ass.”

On April 4, the story of yet another fallen “HD warrior” drove home how the condition often strikes in the prime of life and is ultimately fatal. That night, Ramona Johnston, the wife of longtime San Diego Chargers football team public relations director and major HD fundraiser Bill Johnston, succumbed to the disease after more than 20 years of brave struggle. Diagnosed at age 39, Ramona was just 60.

“Ramona passed away last night after fighting unbelievably hard against this horrible disease,” Bill wrote on Facebook on April 5. “As much as I knew this day would come, it hurts so bad that my girl is gone. She’s the strongest, toughest, bravest person I know. One of God’s angels on earth finally has peace and is with Him in heaven.”

Introducing Rod Man

HD affects not just individuals but families. To illustrate that, as promised earlier, I’m now providing a detailed report on Rob’s important and moving February 25 keynote address to several hundred scientists, drug hunters, and advocates at the 14th Annual Huntington’s Disease Therapeutics Conference. Sponsored by CHDI Foundation, Inc., the event took place at the Parker Palm Springs hotel in Palm Springs, CA. 

A standup comedian, Rod Man was the winner of season 8 (2014) of NBC’s Last Comic Standing reality TV talent competition. He has appeared at Caesar’s Palace in Las Vegas, the Apollo Theater in New York City, and the Gibson Amphitheatre in Los Angeles, where he resides. He has also appeared in film and TV roles, and hosts his own YouTube shows.

“That’s my passion,” said the performer known as Rod Man. “Tonight, we’re going to set a different tone. I am Rod Thompson tonight.”

A native of the small Georgia town of Villa Rica, Rod was the first African-American CHDI keynoter. His family’s story underscored the fact that HD affects people of all ethnicities, as well as both sexes.

“As an African-American, I know that sometimes we don’t get the information,” Rob commented. “I’m here as a black man.”

However, he said, he recognized that HD affects his family just as it does others. He said that he aimed to “promote conversation” and awareness about HD, no matter what a person’s personal or educational background.

Rod "Rod Man" Thompson (right) exchanges laughs with leading HD researcher Steven Hersch, M.D., Ph.D., of Voyager Therapeutics, after Rod's keynote speech (photo by Gene Veritas).

The challenges families face

Rod titled his presentation “The Cycle: My Mother’s Story.” Interlacing humor with wrenching stories of HD’s debilitating physical and mental impact on his 66-year-old mother Shirley, Rod captured the many aspects of HD that families struggle with and doctors and scientists seek to alleviate.

His speech reflected once again how, as an inheritable disease, HD affects the extended family. His elder daughter prepared the slides for his talk. It included photos of Shirley and three aunts – all now in nursing homes – and a cousin also stricken with the disease.

Rob recalled how his maternal grandmother was initially misdiagnosed with cerebral palsy. Growing up, he was unaware of HD. “I just knew my grandmama was mean,” he said, referring to HD’s psychiatric and behavioral symptoms.

Before arriving in Palm Springs, Rod interviewed his sister, the primary caregiver for his mother in Villa Rica. She described details of Shirley’s daily struggles with HD, as well as the constraints it imposes on her own life.

“I understand how it affects her life,” Rod said. “She said, ‘Yes, it’s a lot to deal with.’”

Because of her “sacrifice” to care for Shirley, Rob’s sister has for now given up her own career dreams in fashion design, Rob added. “I could see the anger build in her, because she feels like, ‘If I don’t, who else is going to?’”

Rod recognized that other HD families face a similar battle. “It’s like having a child sometimes,” he said of the inability of HD people to care for themselves and the challenges faced by caregivers.

Shirley’s decline

Shirley showed symptoms before her official diagnosis in 2016, Rob explained. 

“Once they told her, she broke down and cried, because she knows from her sisters and her mama what it does,” he said.

Rod described the terrible physical, cognitive, and psychiatric decline that HD has wrought in his mother.

“I see depression and sadness about stuff that can be a misunderstanding to most people, and they’ll let it go, but she still holds on to it and harbors it,” Rod said.

Because of Shirley’s involuntary movements, the family also keeps kitchen utensils away from her to prevent her from injuring herself or others. She can no longer walk normally.

“Now it’s better for her to eat with her hands, because she’s a little shaky,” Rod explained. “Her body’s not the same.”

Inspiring the scientists

Untested, Rod and his two daughters – a college graduate and a high school student – are also at risk.

Rod and members of his extended have candid conversations about testing. However, he added, “Most people in my family are scared to get tested.” That reflects the majority attitude in the HD community. 

However, Rob hopes for a cure, hence his motivation to keynote the conference. “I appreciate what you guys do in your work day to day,” he said. “You all do admirable work. Hopefully, by telling my story, and others like me, you’ll get inspired.”

Rod received a standing ovation.

You can watch Rod’s address in the video below.

Celebrating Ramona’s life

Ramona died at Edgemoor Hospital in Santee, CA. The highly regarded public long-term care facility has cared for dozens of HD patients over the last few decades.

In early 2017, when the Chargers announced their move to Los Angeles, Bill made a gutsy, loving decision: after 38 years with the team, he quit so that Ramona could stay at Edgemoor. He visited her there each morning before heading to work.

“Everybody would make the same decision I am making if they were in my shoes,” Bill said at the time. “It’s just the situation I find myself in.” (Click here to read more.)

Bill now works for the San Diego Padres baseball team, which has supported his advocacy.

Ramona’s son Jared tested negative for HD. Untested, daughter Hayley is the vice president of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA). She and Bill continue as leading advocates in Southern California. Their efforts have raised almost $3 million for HDSA.

A Celebration of Life will take place at 1 p.m., April 17 at Skyline Church, 11330 Campo Road, La Mesa, CA. In lieu of flowers, memorial contributions may be made to HDSA or www.HelpCureHD.org.

The Johnston team at the 2014 Rock-n-Roll Marathon raising funds and awareness for HDSA. Bill has his arm around Ramona, in wheelchair. Daughter Hayley stands directly behind Bill (photo by Andrew McClanahan/PhotoRun.net).

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.