After a horrid year, free streaming of ‘Dancing at the Vatican’ is an inspirational gift and a call to aid Huntington’s disease families

Dancing at the Vatican, the 38-minute documentary featuring South American Huntington’s disease-afflicted families’ remarkable 2017 encounter with Pope Francis at the Vatican, will be streamed indefinitely on YouTube for free starting December 1.

“The film has a distinct Christmas theme – the surprise invitations to the HD families in Latin America all arrived on the Epiphany,” wrote Dancing at the Vatican producer and narrator Charles Sabine in a recent e-mail to me, referring to the Catholic feast day, January 6, on which the HD families in South America received the official invitations to meet the pope. “So, I am going to be encouraging people to regard this as an inspirational gift at the end of a pretty horrid year.”

 

HD families from Colombia, Venezuela, and the pope’s homeland, Argentina, had met with the pontiff at #HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America (click here to read more). Some 1,500 HD family members and their supporters – including my family and me – attended from around the world.

 

For the first time, a world leader had recognized Huntington’s disease.

 

Pope Francis with HD families in Rome, May 18, 2017 (photo by #HDdennomore)

 

Online starting December 1

 

Starting December 1, you can watch Dancing at the Vatican by clicking here. Also, the English-language film now has versions with subtitles in French, German, Italian, Portuguese, and Spanish.

 

The producers request that people click on the “subscribe” button on YouTube and leave comments on the film to help facilitate tracking of its viewings and to further support the HD cause. In the spirit of a heartwarming holiday gift, they also ask that viewers share the video with at least two people who have not heard about HD before.

 

According to Ignacio Muñoz-Sanjuán, Ph.D., a leading HD researcher and a co-organizer of #HDdennomore along with Sabine, the papal audience brought “critical” recognition to HD families living in “extremely vulnerable conditions.”

 

“This has touched them and their communities in many ways,” Dr. Muñoz wrote me. “But their plight continues, and the documentary should be a call to action to help those in most need, regardless of where they live in the world.”

 

In the spirit of Dancing at the Vatican, the HD community can come together to “give voice to the voiceless” and raise badly needed funds for local patient associations as well as Factor-H, a nonprofit organization that he co-founded to aid Latin American HD families, Dr. Muñoz added.

 

A message for all faiths and backgrounds

 

Dancing at the Vatican captures key moments of the impoverished, disease-stricken families’ extraordinary journey – some had never ventured beyond their home towns; some even lacked birth certificates – to their meeting with the Spanish-speaking Francis, the first Latin American pontiff in the Catholic Church’s 2000-year history.

 

#HDdennomore was open to people of all faiths and backgrounds, as were the three in-person screenings of Dancing at the Vatican in Los Angeles, London, and San Diego.

 

Sabine and the film’s organizers had hoped to organize additional screenings in the U.S., Europe, and South America.

 

However, the COVID-19 pandemic – which has made 2020 a trying year for all of humanity – forced the organizers to scuttle those plans. Instead, they have focused on the plan to provide free online access to Dancing at the Vatican.

 

Depending on the local impact of the pandemic, some communities might organize in-person screenings, Sabine explained.

 

“For example, in New Zealand, where COVID-19 has been virtually eradicated, there will be screenings in the first week of December in actual full movie theatres,” he noted.

 

Taking on HD families’ suffering

 

Sabine said that the Vatican’s communications department will help promote the online launch. In addition, the producers will promote the film “on all the relevant family organization websites and social media” and also reach out to clinicians, pharmaceutical companies, and nonprofits involved in HD, he said.

 

The screenings and publicity about the online screenings have been sponsored by Roche, Ionis Pharmaceuticals, Inc., Wave Live Sciences, and Takeda.

 

According to Sabine, the film demonstrates that “anything can be achieved if you put together enough people who believe that nothing is impossible.”

 

Also, he suggested, the HD community can use Dancing at the Vatican to promote the cause by “showing that, as Pope Francis said, it is time for HD families to be ‘Hidden No More.’” 

 

Dr. Muñoz pointed out that HD continues to devastate the South American families portrayed in the film. (An upcoming article will update the families’ stories.)

 

The film and the efforts of advocates such as Sabine and Dr. Muñoz echo the words of Pope Francis, who in his speech at #HDdennomore emphasized “what Jesus himself taught us.”

 

“Throughout his ministry, he met many sick people,” Francis stated. “He took on their suffering; he tore down the walls of stigma and of marginalization that prevented so many of them from feeling respected and loved.”

‘Twas the morning after Christmas – and Huntington’s disease hit us like a ton of bricks

I dedicate this article to the repose of the brave souls who have lost the fight against Huntington’s disease.

Twenty years ago this holiday season, my wife Regina and I received news that changed our lives forever: my mother Carol Serbin had been diagnosed with Huntington’s disease, and I had a 50-50 chance of having inherited the genetic defect that caused the deadly disorder.

It happened the morning after Christmas 1995.

As I took stock of that year and looked forward to 1996, I felt calm and accomplished and, despite my habitual caution, even swaggered a bit. I was savoring that extra-special, carefree holiday feeling of the college professor: finals were over, grades were in, and I had a month off.

I felt immensely privileged. In addition to winter and summer breaks devoted to reading and relaxation, my position afforded me annual trips to pursue historical research in the country that had become my second home: Brazil. I felt confident as I neared the half-way mark to tenure, which would provide me job security.

In five days, on December 31, I would turn 36. Regina, who was 29, and I had purchased a condo near the university. It was just a few minutes’ drive from the beach in San Diego, a city with spectacular scenery and perhaps the world’s best climate.

My achievements gave my parents great pride and vicarious fulfillment. My father Paul had moved our family from Cleveland to Anaheim in June 1966, but, two weeks later, missing home and regretful that we kids would grow up far from our doting grandparents, packed up everything and moved us back. Regina and I now could live the California dream he had pined for. She and I talked of starting a family and saving for a vacation home in Rio de Janeiro, where she grew up.

At around midday, everything suddenly changed.  In a phone call with my sister in Cleveland, I received the greatest shock of my life: my mother had HD.

Paul and Carol Serbin around the time of her diagnosis with Huntington's disease (above, family photo) and a decade later as the disease ravaged her mind and body (below, photo by Gene Veritas, aka Kenneth P. Serbin)

We had never heard of Huntington’s disease. According to my mother’s doctors, the disease was untreatable, inexorably destroying her brain. It was causing her to shake uncontrollably – and to lose her mind.

Learning that I had a 50-50 chance of carrying the bad gene instantly put all of our hopes and dreams on hold.

Would we be able to start a family? Could we still buy that condo in Rio? In bed one night shortly thereafter, as I became gripped with fear, Regina held me tightly.

Kenneth and Regina Serbin after his dissertation defense, University of California, San Diego, 1992 (family photo)

Still symptom-free

Each year since, Christmas has brought a sorrowful reminder of my mother’s diagnosis – and of the risk I face. After much personal reflection and discussion with Regina, I got tested for HD in 1999, and unfortunately learned I was a carrier of the defective gene.

Through more than 200 articles in this blog since 2005, I have told the story of my family’s battle, chronicled the scientific movement to defeat HD, and explored the challenges of individuals, families, and society coping with this vexing, tragic disease.

As the 20th anniversary of our initiation into HD approaches, I recognize how fortunate I am to have remained free of the classic symptoms. This month I turn 56, an age when my mother faced the triad of HD problems: chorea (uncontrollable movements), cognitive difficulties, and emotional and behavioral disorders.

As I watched her decline and ultimately die of HD in 2006, after nearly two decades of suffering, I never imagined that I would reach this stage symptom-free. At my recent, annual visit to my neurologist, she found no signs of the disease.

I have much to be thankful for. I savor every moment like a sip of fine wine.

Regina, an educator, just obtained her administrative certificate, which qualifies her to shift from teaching to a job as principal. Our beloved daughter Bianca, who tested negative in the womb, will not develop juvenile Huntington’s. She’s a hard-working high school student, choral singer, and field hockey player.

Still able to pursue my professional passions, I am writing a book on ex-revolutionaries in power in Brazil and advocating with the rest of the HD community for better care and the discovery of effective treatments.

The Serbin Family 2015 Holiday card (family photos)

A lonely holiday

However, I know that I am not in the clear. Because I carry the bad gene, I will develop HD.

As an advocate, each day I share in the suffering of other families hit with Huntington’s.

This Christmas season, as I celebrate my family’s accomplishments, it’s lonely without my parents.

Because of HD, my mother could never really hold baby Bianca. HD took Carol’s life when she was just 68, robbing her of the opportunity to watch Bianca grow into a young woman.

I can’t share with my mom the success and many happy moments that she desired for me.

I also miss my father, the “HD warrior” who cared for Carol daily for more than a decade as her symptoms worsened and died with a broken heart three years after her death, in 2009.

Awaiting the gift of a cure

In 1995 we were so young, full of plans and hopes!

Huntington’s disease took away our innocence. In those first months after learning of my mother’s diagnosis, I began for the first time to comprehend mortality and the preciousness of time.

Because of HD, life became something very different from what I imagined it might be.

As I look back on the past 20 years, however, I recognize that for many, with or without HD, a smooth path cannot be predicted. And I recognize that life has brought me many good things.

Unlike my mother, who had no inkling that HD was ravaging her brain, I have had the chance to build a strategy to avoid onset and plan for the many social implications of the disease.

While my mother developed HD before the gene was even discovered in 1993, I live at a time when historic clinical trials might turn HD into a disease that can be managed like diabetes and other conditions.

This Christmas, as I commemorate the birth of Christ, I am thankful that my parents gave me the gift of life.

I look forward to a future holiday season when Huntington’s disease families can rejoice in a cure.

Merry Christmas and Happy Holidays!

Gene Veritas at the San Diego shore (family photo)

Creating a Christmas memory for a Huntington’s family

As he slowly succumbs to Huntington’s disease, Dan Boyle of Bakersfield, CA, is building a legacy for his five-year-old at-risk son Colby to remember when the symptoms make impossible his greatest professional love: conducting music.

On the evening of December 19, with his musically inclined wife Audrey and Colby present, Dan, 45, will lead the Poway High School Band in a performance of “Russian Christmas Music,” the piece that inspired him to pursue a musical career when he played trumpet in the band in the mid-1980s.

“Every aspect of music is cool,” Dan said as we sat outside the Poway High band room this morning after he conducted a half-hour rehearsal of the song along with 175 band members. “I just want him to see this particular aspect. He can already pick up my trumpet and make a sound. He’s been to all our performances. The more avenues he can see, the better.”

A tradition more than three decades old, the annual Poway High Winter Band Concert involves band alumni in the performance. This year, because of Dan’s popularity and his struggle against HD, alumni from around the country and as far off as Japan will visit and play their instruments under his direction.

“He’s the last person in the world that deserves this, although we knew there was a possibility,” said Ron Schei, a childhood friend who lives near Toyko, referring to Dan’s diagnosis and his family’s history of HD. “It’s just a horrible, horrible thing.

“It’s a beautiful event. It’ll be important for Dan and for us. And if it leads to more awareness – most people don’t know about Huntington’s – and brings in some donations for the cure, it’ll have a positive effect.”

“They want to share that experience with him,” Sylvester Sybilski, the assistant band director, said of Dan’s friends. “That’s what I think is touching everyone’s heart: how he’s trying to create these moments for his son and videotape them so that eventually, when the disease gets the best of him, his son will have a record of all these events he’s going to be doing for the next five, ten years.”

Christmas this year has a special meaning for Dan. “Seeing how many friends are coming, it really makes you feel good,” he said.

Ron Schei (left) with friends Colby and Dan Boyle at Poway High School (photo by Gene Veritas)

The first symptoms

Over the years, Dan had garnered recognition for his musical talent and leadership. A native of Rancho Bernardo, CA, he was part of a world champion drum corps team at the University of California, Los Angeles, where he and Audrey met while both receiving degrees in music education. In Bakersfield, CA, where the couple worked as music educators, he was teacher of the year at Highland High School, and in Kern County he was named jazz educator of the year, orchestra educator of the year, and band director of the year.

However, Dan’s fate would include an encounter with HD. His mother, aunt, and grandmother all died of HD. He first noticed symptoms in himself in 2009 and received an official diagnosis in 2010.

After more than a decade of employment, he was no longer able to work. He receives a public school teacher’s pension and Social Security disability, while Audrey, 40, continues to work as a junior high school music instructor and band director.

In a typical progression of HD symptoms, Dan said that he can no longer multi-task, and his short-term memory is bad.

“Packing yesterday, there were three different times when I went to get the same item,” he said with a bit of a chuckle. “In the big realm of things, I would rather have short-term than long-term memory loss. Long-term is your real memories. Short-term is convenience.”

Fear of falling

HD is also affecting him physically. He has a still mild version of the involuntary movements experienced by most HD patients. His eyes move irregularly or sometimes seem to stare into space, and his face freezes up. He also has some difficulty in speaking.

“I used to hike and ski,” Dan said. “I was never very fast, but I hiked the Grand Canyon rim to rim back in 2005.

“I just started to feel weaker. I hadn’t gone skiing since Colby was born, and last winter we went. Before I was diagnosed, I could do the intermediate slopes. (This time) I was on the easiest slope there was, and I fell like ten times.”

He adds, chuckling, “I have no sense of balance! I think I know when to say when.”

Falling presents the biggest threat to Dan’s health. He recently needed to receive staples for a gash he suffered on his head. During our conversation, he turned his head to show me a very large, red bump on the back of his head from another fall just yesterday.

He plans to start using a motorized wheelchair soon.

Dan also suffers from diabetes caused by another genetic condition, hemochromatosis.

“I won the lottery, I guess,” he said with a laugh.

The conductor’s passion

However, HD’s onslaught has not stopped Dan from conducting again for the first time in several years. In today’s rehearsal of “Russian Christmas Music,” he sat in a conductor’s chair and will do so again at the concert.

“I conducted ever day, five hours a day,” Dan recalled. “When you teach music, you stand all day. It would never bother me, even a little bit.

“Over the last six to eight months, I have noticed an extreme shrinking of the time that I can stand without pain.”

Sylvester and band director Mike Cook are “bending over backwards” to make it possible for him to conduct, Dan said. He happily complied with Mike’s request for a taped audition.

Poway High School band director Mike Cook (left) and assistant director Sylvester Sybilski (photo by Gene Veritas)

“You can easily ruin a performance as a conductor, and because the score is an advanced score, he just wanted to make sure I could still do it,” Dan said.

Although Dan experienced some HD movements during the rehearsal, he successfully finished the piece along with the students.

“’Russian Christmas Music’ is a very challenging piece of music,” said Sylvester. “So, even for someone in perfect health, it would be a challenge. I think it went very well.”

“His mind seems pretty clear,” noted Mike, adding that Dan has “an extremely bright wit” and an “obviously still strong” sense of humor.

“It’s a pretty cool feeling to get to control all that sound at once and have it respond to you,” Dan said of the work of conducting. “I couldn’t believe I didn’t really have any good videos of me conducting. I have lots of me playing, but not of my conducting. I’m glad they gave me the opportunity to do this.”

You can watch the rehearsal in the video below.

'Russian Christmas Music' Conducted by Huntington's Disease Patient Dan Boyd from Gene Veritas on Vimeo.

Planning a future for Colby

Dan is also writing an autobiography he wants Colby to read someday. It will include fatherly advice for a young man. It will also address the family’s experience with HD.

During our interview, Colby sat next to Dan. Engrossed in a hand-held video game, Colby raised five fingers when asked to tell his age.

Like many HD families, the Boyles faced difficult decisions. Colby was born not long before Dan’s symptoms began. Even though the couple knew of Dan’s risk for HD, he had not been tested. Nor did they resort to methods for avoiding the transmission of the mutation. They preferred to let life take its natural course.

“Obviously I worried about passing it on,” said Dan. “I just figure there’s always hope for the cure. He could get hit by a bus tomorrow. I could, too. I got a scholarship to UCLA. I played trumpet in 40 of the 50 states. I’ve travelled. I’ve done a lot of good things. Hopefully he’ll be able to experience those things before whatever.”

However, Dan and Audrey are proactive about his HD. They keep informed about the latest developments in HD research. They attended the annual convention of the Huntington’s Disease Society of America in Jacksonville this year and in Las Vegas in 2012. Dan is also participating in a clinical trial to examine the efficacy of the supplement creatine. He plans to enter any other trial for which he qualifies in the future.

“I just want to make sure, whether Colby has it or not, that I’ve done everything possible to help the cause of research,” Dan said. “That’s one of my big responsibilities. When I was a kid they said, ‘Oh, you don’t really have to worry about it, because by the time you’re old enough, they’ll have it cured.’ I remember hearing that time and time again. But that didn’t happen.”

It’s never too late

For now, Dan is taking advantage of every moment.

He uses music, especially playing the trumpet, to try to stave off the impact of HD on his brain.

“There’s so many decisions every second in music,” he said. “It's unbelievable how active your brain is while you’re playing.”

He, Audrey, and Colby will spend Christmas at home in Bakersfield – preceded, of course, by Dan putting out milk and cookies for Colby and Santa Claus.

Audrey didn’t believe people still did that. “She found out the hard way,” Dan said.

“One of the silver linings of this is, because I am home for Colby, I feed him every day, I give him his bath, I wash his clothes, I do his homework with him, I read to him,” Dan said. “We have a really close relationship.”

Dan has a simple message for the HD community, one he will put into practice on December 19: “It’s easy to withdraw and just go into a shell, but it’s never too late to do some of the things that you’ve always done.”

(The winter concert, which will take place in the Poway High School gymnasium, starts at 7. The event is open to the public. Admission is $5. The band directors recommend arriving early to obtain seating. The school is located at 15500 Espola Road.)