Banning college football: an urgent objective for brain health advocates

As more than 100 million people get ready to watch the Super Bowl on February 5, I’d like to point to the increasing number of people who express deep concern over concussions and disabling brain injuries caused by tackle football.

Advocates for Huntington’s disease and other devastating neurological conditions share such concerns. I witnessed my mother’s ultimately fatal fight against HD, a brain disorder that manifests many of the symptoms experienced by football players who have sustained head injuries, including memory loss, aggressiveness, and suicidal tendencies.

Because I inherited the HD gene, I face the same fate.

I do not wish HD or anything like it on anybody.

I used to like watching football, especially because the San Diego Chargers supported the HD cause. But after the revelations about head injuries, I stopped watching because doing so contradicted my commitment to brain health. I will not tune in on Super Sunday.

Along with a growing number of scientists, brain health advocates, and athletes and their families, I’m disturbed by the traumatic effects of these injuries. This situation impacts not just the players, but their families, who must care for their loved ones as they watch them struggle with and even die from brain trauma.

As an HD advocate and college professor, I have become increasingly distressed that so many colleges and universities – including my employer, the University of San Diego (USD) – still prioritize the entertainment and community-building value of football over the clear risks to student athletes.

If institutions of higher education truly embody academic integrity and guard their students’ well-being, how can they allow football to continue? Are university administrators in denial about brain injuries, as were the executives of the National Football League (NFL)? How can they possibly allow students to take such a risk?

Highly paid NFL professionals now know what they face. In an admission some say echoes Big Tobacco’s recognition that smoking causes cancer and heart disease, in March 2016 the NFL finally acknowledged the link between football and CTE (chronic traumatic encephalopathy), a disabling brain disease first seen in boxers in the mid-twentieth century. Last December, the conclusion of the historic concussion lawsuit against the NFL paved the way to potentially distribute up to $1 billion to as many as 20,000-plus (!) former players.

College players are not professionals, although many coaches and athletic programs treat them as such, albeit without compensation. They are students. Colleges are not businesses. They are institutions of learning. They should not expose students to the possibility of CTE, Alzheimer’s disease, Parkinson’s disease, Lou Gehrig’s disease, and the other disorders caused by concussions and the numerous sub-concussive hits to the head that occur in a football game.

Unnecessary risks

Since November 2013, I have advocated at USD for player safety in light of the revelations about concussions and brain trauma (click here to read more). Other faculty members are also troubled by the risk to student health.

With the mounting scientific evidence about the dangers of football, Professor Daniel Sheehan, Associate Professor Nadav Goldschmied, and I (Gene Veritas, aka Kenneth P. Serbin) have proposed a resolution for the February 7 meeting of the Academic Assembly of the College of Arts and Sciences strongly urging that “the USD football program be terminated immediately.”

We know some consider this premature, or would call us killjoys. But we can’t ignore such a serious threat to student health.

“Knowingly putting our athletes at such risk is not consonant with the mission of the University,” the proposed measure states. “Putting athletes at unnecessary risk puts the University in significant legal and financial jeopardy.”

Last November 17, Prof. Goldschmied advocated for the resolution at an informal College of Arts and Sciences gathering where professors made brief presentations of their research and other activities. Referring to USD’s promotional campaign as a “changemaker” university, he titled his talk “Changemakers? Why USD Football Should be Banned.”

“We advertise ourselves as ‘changemakers,’” he stated. “The question is: are we going to follow, or are we going to lead in what we do with our football program?” He received enthusiastic applause.

Prof. Goldschmied said that he had met with USD President James T. Harris III, D.Ed. to recommend the football ban. Dr. Harris declined to institute a ban, stating that the university would reevaluate as further data about football injuries becomes available.

“And I suggested, how about we do it the opposite way?” Prof. Goldschmied said. “Let’s cancel football and, if the data is promising, we will reinstate it.”

Dr. Harris reaffirmed his opposition to cancelling football at a December 8 USD Faculty Senate meeting. According to Senate minutes, he stated: “No universities have closed their football program in the last decade because of concussion evidence yet. It is a complicated issue. We have a successful and a good program. The answer is no but always open to more data and

concussion information.”

Dr. Harris cited other factors for his refusal such as the team’s excellent graduation rate (higher than the university’s overall rate); football’s ability to attract male students (USD has a majority of women); and improvements in USD’s athletic program’s concussion protocols and concussion education. Of course, college presidents must also deal with pushback from alumni, boards of trustees, and fans.

You can watch Prof. Goldschmied’s presentation in the video below.

Changemakers? Why USD Football Should be Banned from Gene Veritas on Vimeo.

Like crashing a car into a wall

As pointed out by researchers, football’s unique danger lays in the fact that it includes subconcussive hits, which don’t rise to the level of a concussion but can compound trauma. While a player might not suffer an in-game concussion, which would get him off the field, he can sustain dozens of the smaller hits.

On January 9, the day Alabama and Clemson played in the college national championship, the New York Times posted a highly telling report illustrating what happens to a football player’s brain from both big and small hits. As a video in the report demonstrates, these hits affect the deepest recesses of the brain.

The article presented data on one lineman’s hits to the head – a total of 62 (!) – while blocking during a single game. The hits had an average force roughly the equivalent to the player crashing a car into a wall at 30 m.p.h. (Click here for the article.)

Given this kind of evidence, it is alarming that football remains a sport at any educational level.

Bo Jackson, the only man to be a baseball All-Star and football Pro Bowler, stated in an interview this month that he would not have played football had he known about the risks of CTE.

“We’re so much more educated on this CTE stuff, there’s no way I would ever allow my kids to play football today,” Jackson said.

A powerful message

As one USD faculty member observed, ending the school’s football program would send a powerful message to other educational institutions, perhaps helping prompt cancellation of college football across the country.

Instead of becoming a “Notre Dame of the West,” as some have suggested, USD, a Catholic institution, could uniquely project itself as a moral and intellectual leader.

Those of us in the Huntington’s, Alzheimer’s, Parkinson’s, and numerous other neurological disease communities know all too painfully the vulnerability of the brain, the immense caregiving cost to families and society, and the suffering of the afflicted.

By joining the cause to protect college students from brain trauma, we can reinforce overall support for brain health and neurological research and funding.

In the final analysis, we are protecting our – and college students’ – most important natural resource: our brains.

Passing on the Huntington’s disease advocacy baton to the next generation

In the fight against Huntington’s disease, a familial condition that can plague generations, each generation must pass on the advocacy baton to the next.

I feel as though I've started my handoff to my daughter Bianca.

HD has profoundly affected my family in multiple ways. My mother was diagnosed with HD in 1995 and died from it in 2006 at age 68. I tested positive for the genetic defect in 1999, and have been racing against the genetic clock ever since. Bianca, thankfully, tested negative in the womb in 2000.

At 57, an age when my mother had chorea (involuntary movements) and severe cognitive loss, I am blessed to have remained symptom-free. However, because HD gene carriers inevitably develop the disorder, I know that, unless scientists discover an effective treatment, I will someday become ill.

HD families must stick together to confront the devastating symptoms, caregiving demands, and difficult challenges the disease brings, but it’s by no means easy.

Avoiding the denial that prevents family solidarity and feeds ignorance about the disease, my wife Regina and I have revealed to Bianca at appropriate moments how HD has impacted our family. We have done so gradually but always honestly. Often, we spoke about HD in response to her questions. (To read more, click here and here.)

Gene Veritas (aka Kenneth P. Serbin) with daughter Bianca and wife Regina (2016 family photo)

A biology assignment

Now 16, Bianca is a healthy and vibrant high school junior. She has frequently read this blog and over the years has participated in several fundraising events for the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego).

Her gene-negative status means that the threat of HD stops with me. Of course, she is concerned about my health, and she is deeply saddened by the plight of juvenile HD patients. She has volunteered for HDSA-San Diego.

Last week she worked on an assignment for her high school biology class titled “A Day in the Life: A Study of Human Genetic Disorders.” From a list of diseases, she chose HD. Drawing on medical and scientific sources, she wrote a four-page summary of the biology of HD, symptoms, its rare status, age of onset, and potential treatments.

Life with HD

For the required creative component of the assignment, Bianca wrote an imaginary patient journal titled “Life with Huntington’s Disease,” from the perspective of this blog, her conversations with me, and her observations over the years.

Bianca captured the sadness, anger, and fear associated with HD. In one excerpt, she wrote:

Today was a bad day. It has been hard lately to ignore HD. I wish I could say I don’t think about it all the time, but I do. Especially now that Mom is getting worse. She can barely walk at this point. Dad helps her eat, shower, use the bathroom, and dress herself. It’s hard for me to see my mom act in a more childish manner than my three-year-old daughter. It’s hard for me to see my mom this way because I know that I will one day experience the same thing. I feel exceptionally lonely nowadays. I know others who struggle or who have struggled to take care of someone with HD, but I somehow feel like my situation is unique, somehow worse than everyone else’s.

However, Bianca also portrayed the strength and hope of HD families and advocates, writing:

Perhaps the best part of having HD is getting to meet so many people who are involved with the cause. The Huntington’s Disease Society of America is one of the most supportive groups of people I have ever worked with. Few know the struggle that accompanies this disease. It’s nice to be able to talk to people who do, people who have lost loved ones, as I have, to this horrible sickness, people who, like me, are at risk.

Bianca Serbin (photo by Gene Veritas)

Honesty and family solidarity

Reading Bianca’s words, I know that HD is forever seared into her consciousness.

I was deeply moved by her decision to write about our family’s struggles with Huntington’s. I am very proud of her.

The experience reinforced the necessity of accurate, patient, and, above all, honest communication within Huntington’s families.

In our conversations last week many powerful memories came to the fore. Bianca told me that one of her earliest recollections was of us visiting my parents’ home in Ohio (she was three) and seeing my father and me help my mother after she fell on the floor.

Bianca learned from me last week how the disease could potentially affect other members of our extended family.

As I looked at her, I felt an immense sense of relief that she is HD-free. I also felt wonderful anticipation: in less than a year she will be applying to college.

‘Don’t worry for now’

At the conclusion of our conversation the night before Bianca turned in the assignment, we discussed the fact that the greater the genetic defect (gene expansion), the earlier the onset.

We inevitably focused on my potential age of onset, ranging from the late forties to the late sixties.

“Hopefully I will get sick only in my late sixties,” I told Bianca.

“Or maybe you’ll get sick even later – or not at all!” Bianca responded optimistically.

We discussed the hope of clinical trials.

A bit later, determined not to let all this hinder her life plans, I told her gently: “Don’t worry about HD for now. That’s something off in the future.”

Bianca and Kenneth Serbin (family photo)

‘Concussion’: advocating for the truth about brain diseases

In this era of growing concern over sports injuries, increased prevalence of neurological diseases, and pioneering brain research, the just-released movie Concussion hits home.

With Will Smith starring as the Nigerian-born Dr. Bennet Omalu, a forensic pathologist in the Allegheny County, PA, coroner’s office who was the first to identify a debilitating brain disease in deceased former National Football League (NFL) players, Concussion reveals how powerful political and financial interests prioritize profit over health, trying to bend or even snuff out inconvenient scientific knowledge.

Concussion also shows how scientists and physicians must sometimes go beyond the lab – even risking their jobs – to advocate for the truth.

As a Huntington’s disease advocate also keenly interested in the condition studied by Dr. Omalu, chronic traumatic encephalopathy (CTE), I applaud how Concussion helps raise awareness about brain health.

Like HD-affected individuals, people with CTE can suffer from symptoms such as depression, wild mood swings, forgetfulness, irrationality, insomnia, dementia, and suicidal behavior.

Dr. Omalu’s fight to get out the word reminds me of the long struggle against ignorance, stigma, and denial faced by families confronting HD and other rare and neurological conditions.

‘Trauma chokes the brain’

I watched Concussion on December 27. It dramatically portrays Dr. Omalu’s discovery of CTE in the brain of Mike Webster after the former Pittsburgh Steeler star lineman died in 2002 at the 50, having struggled with behavioral issues, depression, and other cognitive difficulties.

At the end of his life, estranged from his family, Webster lived in a pickup truck. Suffering from severe insomnia, he would shock himself with a Taser gun in order to fall asleep.

Using data from the Webster autopsy, Dr. Omalu and other researchers published an article in the scientific journal Neurosurgery suggesting that the impact of Webster’s football career caused CTE.

Dr. Omalu then found CTE in two other dead players.

“Repetitive head trauma chokes the brain,” Dr. Omalu declares in Concussion.

Ignoring the evidence

“You’re going to war with a corporation that owns a day of the week,” warns Dr. Omalu’s boss, coroner Dr. Cyril Wecht, portrayed by Albert Brooks, in reference to the immense popularity of the NFL.

Betraying both ignorance and arrogance, the NFL tried to force Omalu to retract his research, something a scientific journal would do only in the case of plagiarism or falsification of data. Concussion depicts that ill-fated attempt and Omalu’s resultant indignation.

Unable to stop Omalu, the NFL, led by Commissioner Roger Goodell, then turned on its effective public relations machine.

As shown in the film, it also ignored Dr. Omalu, refusing to allow him to even enter the room at a league meeting held to discuss his findings. They were instead presented by Dr. Julian Bailes, a former Steelers team physician – played by Alec Baldwin – who had become convinced that football endangered players.

As Concussion depicts, Dr. Omalu and his wife were forced out of Pittsburgh. He took a job as the chief medical examiner in San Joaquin County, CA, but continued to press the issue of CTE.

You can watch the Concussion trailer in the video below.

Mounting statistics

Concussion, for all its painful drama, actually takes a relatively mild approach For example, it doesn’t show all of the toll football took on Webster’s body and mind.

Complementing Concussion, the award-winning Frontline documentary League of Denial: The NFL’s Concussion Crisis, shows photographs from the Webster autopsy and delves more deeply into the science and politics of CTE. It originally aired in 2013 and replayed this month in anticipation of Concussion.

Two League of Denial collaborators, ESPN journalists Mark Fainaru-Wada and Steve Fainaru, have described the issues of CTE and football head trauma as a “public health crisis.” 

As noted in League of Denial and other media reports, NFL doctors and officials have consistently tried to downplay the CTE evidence. Among their claims: the number of dead players examined was too small to qualify as scientific evidence, and some players endangered themselves with issues such as steroid abuse.

“You can’t go against the NFL,” says the real Dr. Omalu in League of Denial. “They’ll squash you.”

However, as Frontline revealed in an online report in September and in this month’s broadcast of its documentary, the statistics are now overwhelming: 87 of 91 NFL deceased players tested positive for CTE. That’s a rate of almost 96 percent. With semi-professional, college, and high school players included, the figure is 79 percent.

A young star retires

The League of Denial update highlighted the case of Chris Borland, a highly aggressive tackler for the San Francisco 49ers.

“I knew of CTE,” Borland said in an interview for the program. “I didn’t know what the acronym stood for. I started with Google searches. I started looking at things: what does this term mean? Where is the research done?”

Borland understands that as a player he was prone to both receiving and inflicting trauma-producing hits. “You understand on a certain level what you’re doing,” he said, “but you don’t know the science behind it.”

In March 2015 Borland spoke to Robert Stern, Ph.D., of the Boston University CTE Center.

The documentary update cuts to an interview with Stern explaining that knocking heads in pro football is the “equivalent of driving a car at 35 MPH into a brick wall, a 1,000 to 1,500 times per year.”

After that call, Borland immediately retired from football.

“The idea that just the basis of the game, repetitive hits, could bring on a cascade of issues later in life, it changed the game for me,” he explained.

Is football safe?

Borland’s decision shocked the sports world.

Goodell immediately began damage control.

“I think our game has never been more exciting,” he said in a TV interview replayed by Frontline. “It’s never been more competitive. And I don’t think it’s ever been safer.”

“It’s dishonest, and I don’t think it’s responsible, to say that the game is safer,” Borland countered in the Frontline report. “I think that’s just not true, and the players themselves on the field know. I mean, they’d scoff at that. That’s not accurate.”

Borland recalled that the NFL’s own actuaries estimated that 30 percent of the league’s veterans would develop brain damage.

“I really don’t watch football anymore,” he said.

Concussion safety advocate Chris Nowinski, a former Harvard University football player and professional wrestler, said of Borland’s retirement: “It really made me wonder: if every NFL player had the access to the information he has, would they make the same choice?”

You can watch a Frontline report on Borland in the video below.

Continued risks

A steady flow of other reports in 2015 further highlighted the risks of football.

In August, a research study underscored the growing concerns about the impact of youth football.

In November, lawyers for the thousands of former NFL players and families who were awarded a $1 billion payout from the league for cognitive difficulties from concussion-related injuries returned to court to request an appeal so that CTE can be covered in the settlement. A decision on the appeal is expected in early 2016.

Also in November, the family of Pro Football Hall of Famer Frank Gifford, who died in August, revealed that he suffered from CTE and had shown signs of cognitive debilitation.

That month, continued weaknesses in the NFL’s concussion policies became evident as several players suffered conditions but continued to play because they were diagnosed only after their games.

Refusing to back down

Contrary to Concussion’s and Dr. Omalu’s assertions that he discovered CTE, medical researchers have been investigating the disease since at least the 1940s.

At that time, they focused on the risks of boxing. It’s no surprise that doctors and researchers have now found the disease in football players.

The themes of Concussion are deeply familiar to neurological disease communities. In the Huntington’s community in particular, affected families, advocates, researchers, and drug developers witness both the majesty and delicateness of the brain on a daily basis. We seek badly needed treatments for an incurable disorder that disables people physically and cognitively, turning them into a mere shadow of themselves.

Although ignorance and denial might still lead some to view HD as some personality quirk – just as deniers of football trauma dismiss the link between head trauma and behavioral problems – the informed members of the HD community know that this medical condition can be explained by science.

Despite the campaign against him, Dr. Omalu refused to back down. He drove home how dangerous football can be. The film reminded me of my realization years ago that I could no longer watch football with a clear conscience. Now I rarely watch it at all.

Those affected by HD, Alzheimer’s, Parkinson’s, Lou Gehrig’s, traumatic brain injury, and the myriad of other neurological and rare diseases should also not back away from their commitment to advocacy. Dr. Omalu’s example gives us courage to keep fighting for a clearer understanding of these conditions, better care for those who suffer from them, and ultimately the development of effective treatments.

Click on the links below to read my previous reports about the concussion crisis.

"It's playoff time - and a reminder that brain health comes first"

"Junior Seau, Super Sunday, and our most important national resource"

"Finding America's passion: the NFL and Huntington's disease"

New film unmasks the raw reality of Huntington’s disease

A new, award-winning documentary film, The Huntington’s Disease Project: Removing the Mask, reveals the raw reality of HD so thoroughly and authentically that it should become required viewing for health care professionals and trainees in the neurological field.

This 100-minute film, not yet released widely, is also a must-see for the HD community and the general public, although it will likely cause many to recoil from what it calls the “monster” tormenting HD-affected individuals and their families.

As an HD gene carrier and long-time grassroots advocate who saw his mother succumb to the disease, I consider myself a hardened observer.

Even so, Removing the Mask shocked me with its exploration of the lives of HD-affected individuals and caregivers, including producer and narrator James Torrington Valvano, diagnosed with HD in 2009 yet still able to function sufficiently to make the film.

With an anthropologist’s eye, James probes the many layers of HD reality – and the hearts of its victims.

Removing the Mask delves into the wide range of issues HD families face, including medical challenges and social disruption.

The HD community will recognize many of them, although they are rarely discussed so openly in a medium such as film: ignorance about the disease, misdiagnosis, denial, family tensions, rage and aggression, genetic testing, financial devastation, caregiving, and loss of the affected individual’s independence, to name just a few.

Removing the Mask does not shy away from the most difficult themes: inaccurate racial interpretations of HD by physicians, associated sexual disorders, suicide, the exclusion from clinical trials of HD people with suicidal tendencies, and mercy killing. It also pays close attention to juvenile HD, often omitted in the overall conversation about HD.

In striving for a comprehensive view of HD, Removing the Mask adamantly advocates for a broad understanding of the disease by medical and psychiatric professionals, relevant government agencies, and the public. This includes recognition of HD as not just a movement disorder, but also one involving cognitive, emotional, and behavioral difficulties.

Although Removing the Mask mirrors the detailed information about HD known to specialists, many non-specialist health professionals don’t understand the disease.

Removing the Mask is not a textbook-like film but a genuine illustration of the disease. Rather than a medical or scientific authority explaining HD for us, in the film we feel the pain as the affected and their loved ones tell us what it's really like to have the disease.

James brings it all to life with testimonies that are brutally honest.

You can watch the Removing the Mask trailer in the video below.

Shaving seven hours a day

At James’s invitation, I recently watched the film by myself in a private online session on my home computer.

One of many poignant segments concerns John and Sue Wright of Kent, England. John, who liked to work with computers before he fell ill, was diagnosed with HD in 1992, and soon thereafter Sue became his caregiver. In the film, she describes his mental decline.

“He was waking every morning threatening to kill me and throw me out the window,” Sue recalls. “He was sharpening knives in the kitchen constantly, and he was assaulting me. I always reported the assaults, for my own safety, to the police, but never wanted him prosecuted. I knew it was the disease making him behave this way, and not his intention.”

To avoid harm, Sue moved out, although she returned home up to seven times each day to care for John.

John developed a condition experienced by a number of HD-affected individuals: obsessive-compulsive disorder (OCD).

“He was obsessed with any paper towels, tissues, etc.,” Sue remembers. “He would pile them up and keep them. If I attempted to throw them away, he would retrieve them from the rubbish bin and put them back in their piles.

“He was also obsessed that any facial hair would suffocate him. So he started shaving for up to seven hours a day, making his face red raw.”

Starving himself to death

Sue had to have John legally committed to a mental health facility.

“This was a horrific experience, as the police were brought into the house in riot gear, and he was dragged out of the house still trying to eat his lunch,” she explains. “My twin Sheila was wonderful. She stepped into the house when [it] happened so that John would blame her rather than me for what happened. This gave her nightmares for quite a considerable period but thankfully did preserve John’s and my relationship.”

Over the next several years, John lost his ability to walk and speak. Eating also became extremely difficult. When asked if he wanted a feeding tube, Sue says in the film, John violently shook his head no.

“John indicated that he’d had enough when he started refusing to eat and drink,” she says. “His quality of life was non-existent, and I knew he wanted it to be over.”

Mercy killing is illegal in the United Kingdom. “My only option was to help him as he starved himself to death,” Sue says plaintively.

John died in 2006. He was 56.

‘We have a face’

At the film’s outset, James declares that the HD monster “caused so many people across the world to hide behind masks, masks of silence.[…] It was time to destroy the monster. Our goal was very simple: to remove the mask of Huntington’s disease.”

He adds: “It was time to show the world that we have a face.”

A former mental health care professional and small business owner forced to quit after his diagnosis, James began work on the film in 2011, with a powerful short showing people taking off masks and saying “I am no longer a faceless face” (click here to read more).

Before the short, he had never made a film, although he had studied communications, film, and psychology at St. John’s University in Jamaica, NY, for a while in the early 1990s.

James decided a film was the best way to get out the word about the disease.

“It frustrated me and so many people that no one was telling or showing the real truth behind he disease,” he said. “Advocacy is more than walking, fundraising, wine-tasting, and dinners. All of those ways to advocate are important, but they alone were not working. How can we expect the world to know about HD if we are not willing to get outside the box?”

In addition to his work as an advocate, James cares at home for his older brother John, now in the advanced stages of HD, with the assistance of his spouse, Ian V. Torrington. James’s father died of HD and cancer. Five other siblings and numerous other relatives are at risk for HD. Ian also cares for James.

Ian V. Torrington (left) and James Torrington Valvano (personal photo)

To support the project but also to network globally to raise the profile of HD, James and other advocates from HD families formed WeHaveAFace.org.

Recently granted nonprofit status, the organization provides online and mobile support to the HD community. Activities include fundraising for HD research and family assistance, online support groups, the production of a quick reference guide about HD for police and rescue workers, and a mobile application with ample information about HD.

A number of WeHaveAFace.org’s U.S-based regional advocates tell of their struggles with HD in Removing the Mask.

According to James, he spent less than $7,000 on the film, with funds coming from a t-shirt campaign, other small donations, and “heavy hitting on my credit cards.”

‘We need the world to watch’

According to my conversations with James via Facebook, he and his film team held “dozens upon dozens” of Skype calls and exchanged thousands of e-mails in the background research for the Removing the Mask.

Not everybody agreed with James’ direct approach. According to him, one advocate broke off from the project “because I was tackling suicide.”

James himself admitted experiencing powerful emotions during the project.

“Filming the topic of suicide was one of the most difficult and painful experiences in my life,” he wrote in a digital journal kept during the production. “As a filmmaker you want to get the rawness of the topic, but as a person with Huntington's disease, my heart and soul ached through every second.”

In the film Cindy Dupree, an HD-stricken woman from Alva, Oklahoma, and her husband Ron speak hauntingly about suicide.

“I am not ashamed or afraid to talk openly about suicide, because it affects so many people within the Huntington’s community,” says Cindy.

“I know that she battles thoughts of suicide each day, and I fear that I will receive that call that ‘your wife has just taken her life,’” says Ron. “I can only imagine how other caregivers feel. I know they are fighting the same battles we are. I am angry a lot of the time and do my best to realize and understand that it is the disease and not my wife.”

Cindy says that knowing Ron and their three daughters rely on her keeps her “grounded.”

“The documentary was never created for the Huntington's community,” James added. “We had to get outside the box and set our aim on the general public. Although I believe and hope that the film will resonate within our own community, we need the world to watch exactly what we go through.”

How to see the film

WeHaveAFace.org celebrated the official launching of Removing the Mask on June 20 in James’s hometown of St. Cloud, FL. He has entered it in about a dozen film festivals in the U.S. and abroad.

It won in the category of best feature documentary in the July 2015 monthly competition of the Miami Independent Film Festival.

James hopes to make the film available to the general public in early 2016 via DVD, Blu-ray, and Vimeo.com. He is also hoping to include it on Netflix and iTunes.

For now, organizations and support groups interested in showing the film as part of an HD awareness-building or fundraising event can do so by registering at this link.

The dilemma of illness

The Huntington’s Disease Project: Removing the Mask joins a group of high-quality documentaries about HD launched in recent years, including The Lion’s Mouth Opens, a courageous HBO film about filmmaker-actress Marianna Palka’s decision to test for the genetic defect.

With its unapologetic presentation of HD, Removing the Mask will stir controversy not just about Huntington’s, but also the way in which people and institutions deal with the terrible challenges of neurological disorders in general.

After watching the film, I kept remembering the dilemma I faced six years ago when I was directing the construction of an independent website for the Huntington’s Disease Society of America’s (HDSA) San Diego chapter, whose board I served on.

Should the homepage use positive, “feel good” images to advance our cause? Or should it show the harsh realities of HD? One of my fellow board members, a public relations specialist not from an HD family, cringed when I showed him some of the photos of gaunt HD-affected individuals I was proposing for the site. I indeed used some of those photos on the site (which is no longer operative).

I don’t know if I did the right thing.

I believe that Removing the Mask faces the same dilemma. It’s raw, but will it ultimately be effective?

I believe that it can be in the health care community. Removing the Mask would make a fine multimedia companion to HDSA’s A Physician’s Guide to the Management of Huntington’s Disease.

Professionals and students in the medical professions must see this film. So must public officials like the administrators at the Social Security Administration and doctors who evaluate HD-affected individuals for disability. And so must general medical practitioners, neurologists, psychiatrists, and others who potentially come into contact with HD patients.

I’m hoping that the Miami festival award indicates that the general public is also ready to help destroy the monster of HD.

(Note: I have a very small part in the film, where I take off my own mask, but otherwise had nothing to do with the content.)