Monday, February 08, 2016

The little things that are really big: caregiving in families with Huntington’s disease

The everyday kindness of the back roads more than makes up for the agony of the headlines – Charles Kuralt

As a member of a Huntington’s disease family, I have become deeply familiar with the common yet often unheralded human practice of caregiving.

My “HD warrior” father Paul Serbin cared for my HD-stricken mother Carol for more than a decade.

My mother died ten years ago this week. Her passing sent me into a months-long dual spiral of anxiety and depression: I had inherited the HD gene from her, and seeing her demise provided a portent of my own future (click here to read more).

Because of the inevitability of HD onset, I know that I too will require caregiving.

Furthermore, as a father, I’ve spent the past fifteen years helping my wife Regina raise our daughter Bianca, a special form of caregiving. Bianca tested negative in the womb, thus avoiding the specter of juvenile Huntington’s. As we teach her to drive and begin discussions about college, our role as parents becomes both more rewarding yet more complex.

Three weeks ago, the balance shifted, as Bianca and I became temporary caregivers for Regina: she underwent an operation to repair a torn rotator cuff and must keep her right arm in a sling for at least six weeks.

Completely interdependent

Caregiving is about all of the little – but really big – things we humans do for each other.

It’s how families, hospitals, and nursing homes run.

We are completely interdependent.

As we’ve helped Regina over the past several weeks, the meaning of caregiving has become ever more clear to me.

It involves small but important tasks: bathing her, spraying on deodorant, buttoning her shirt, adjusting her sling, driving her to doctor’s and physical therapy appointments, taking over her share of car pool duties, providing assistance in the kitchen, exercising her disabled arm – these and many more tasks have highlighted for me the importance of caregiving, taught me to be more sensitive to Regina’s needs, and reminded me of what’s most important in life.

Despite a busy high school life, Bianca has helped out, too.

It’s brought us closer together.

Bianca (left), Regina, and Kenneth Serbin (aka Gene Veritas) (photo by Bianca Serbin)

Valid and important emotions

I’m certainly no saint. I’ve done my share of grumbling! And sometimes I feel overwhelmed.

As I’ve learned from news items posted on Facebook HD discussion pages, caregiving experts say it’s okay to experience feelings associated with caregiving such as anger, boredom, frustration, and impatience.

“Whether you become a caregiver gradually or all of sudden due to a crisis, or whether you are a caregiver willingly or by default, many emotions surface when you take on the job of caregiving,” a recent article at Dementia Today states. “Some of these feelings happen right away and some don’t surface until you have been caregiving for awhile. Whatever your situation, it is important to remember that you, too, are important. All of your emotions, good and bad, about caregiving are not only allowed, but valid and important.”

As another article suggests, caregivers need to face emotions directly, find healthy ways to release anger, share feelings with close friends, and take breaks to pursue enjoyment.

These recommendations can apply to short-term caregiving situations such as recovery from an operation but also to long-term situations involving HD, Alzheimer’s disease, and other afflictions.

Overlooked and undervalued

Until my mother went into a nursing home in the final months of her life, my father cared for my mother’s daily needs with the assistance of a professional caregiver who visited their home a few hours each week. He helped her in the bathroom, fed her, and pushed her wheelchair.

She was the love of his life. He was stubborn about accepting more help at home and getting her physical therapy, but each day he climbed with her into the HD trenches.

Not once did I hear him complain. Maybe he should have!

In our celebritocracy, such dedication goes unrecognized. Each year family caregivers are estimated to provide the equivalent of nearly half a trillion dollars in unpaid care.

In America, care and caregiving are “overlooked and undervalued,” writes Zachary White, Ph.D., the author of the blog The Unprepared Caregiver.

Unlike highly valued, professional jobs, informal caregiving isnt considered a career.

“Parents and relatives and friends won’t be able to brag about your experiences.” Dr. White writes. “There are no ‘schools’ of informal caregiving no Harvard or Stanford to use as a guiding goal from which others can respect and admire. Others may speak highly of your role and your efforts, but it begins and ends there.”

While taking care of loved ones, members of the HD and other neurological disease communities have long advocated for better caregiver assistance and nursing home care including disease-specific instruction for health aides. These will remain daunting challenges for the foreseeable future.

Preemptive caregiving

I believe that Regina’s devotion to me and our family is a big reason why I’ve passed my mother’s age of HD onset. She helps provide for the family by working as a full-time elementary school teacher; she sees to it that Bianca and I eat healthily; and she supports my HD advocacy.

She has done a lot of preemptive caregiving.

Caring for Regina during her recovery and remembering my mother’s struggles with Huntington’s have led me to reflect on my future caregiving needs.

As I race against the genetic clock and await the development of treatments for this incurable disorder and a health care system more responsive to those with brain diseases, I want to avoid becoming a burden on my family.

By maintaining good health in the present, I can perhaps reduce that future burden.

However, I know that, for each HD family, this is uncharted territory. We can forge ahead by caring for our our family members – and for the larger community.

Saturday, January 16, 2016

Defeating Huntington’s disease starts with taking care of yourself and joining Enroll-HD

For those of us affected by Huntington’s disease or at risk for it, the fight against the disorder begins by taking care of ourselves.

This idea occurred to me during my daily morning meditation on Jan. 14, 2016, as I anticipated my annual checkup in the Enroll-HD program later that day.

Many people struggling to come to terms with HD ask: with so much to worry about, how can I contribute to the cause?

You can start simply by committing to care for your health and asking family members and others to help monitor your condition. In doing so, you will help your family, too, by preparing for and perhaps even diminishing the current or eventual caregiving burden associated with Huntington’s.

You can extend that assistance to the entire HD community by joining Enroll-HD, a worldwide registry of affected individuals, asymptomatic HD gene carriers, untested at-risk individuals, and other family members. With its growing database, Enroll-HD serves as a platform and research project aimed at facilitating clinical trials and the discovery of treatments.

The greater the participation in Enroll-HD, the faster trials can take place.

Helping the researchers

Not long after learning of my own risk for HD in 1995, I started participating in research projects based at the University of California, San Diego (UCSD), and San Diego State University (SDSU) (click here to read about one example).

In January 2015, shortly after my participation in the PREDICT-HD study ended, I registered in Enroll-HD.

At this month’s follow-up visit at the UCSD Huntington’s Disease Clinical Research Center, I once again gave blood that scientists can use in the numerous research projects facilitated by Enroll-HD. I also underwent a battery of cognitive tests.

In addition, I participated in four research projects by scientists at UCSD, SDSU, and other local institutions. Two involved standing on high-tech platforms designed to detect  balance problems in people who have brain disorders and concussions. Another involved a measure of fine motor skills, which are seriously affected in HD, by writing on a special tablet connected to a computer.

Finally, I spit into a tiny collection tube for a project involving the detection and study of the huntingtin protein in saliva. Abnormal huntingtin causes HD.

Gene Veritas (aka Kenneth P. Serbin) writing on an experimental tablet (above) and standing on a platform to detect balance problems (below) (photos by Ayesha Haque)

A neurological exam

My visit concluded with a standard neurological exam by Jody Corey-Bloom, M.D., Ph.D., the director of the UCSD clinic. Among other tasks, I had to follow her fingers with my eyes, rapidly tap together my thumb with my index and middle fingers, and walk down a straight line for about 25 feet.

To my great relief, Dr. Corey-Bloom noted no irregularities! At 56, I am now past the point at which my HD-stricken mother displayed the characteristic involuntary movements.

Afterwards, I discussed with Dr. Corey-Bloom my questions and concerns about my potential participation in the SIGNAL clinical trial to test a monoclonal antibody as an HD treatment.

I will soon provide an update on SIGNAL.

Enroll-HD’s positive impact

The next day, I obtained the latest news about Enroll-HD from Joe Giuliano, the director of clinical operations for CHDI, the multi-million-dollar nonprofit virtual biotech aimed exclusively at developing HD treatments. In collaboration with HD research centers and clinics around the globe, CHDI sponsors Enroll-HD.

Enroll-HD officially launched in July 2012. According to Giuliano, as of January 15, nearly 9,000 individuals from 14 countries and 140 sites had signed up.

Has the program met CHDIs expectations?

“I think there’s a high level of engagement among the patient community and among the investigators around the world,” he said during a phone interview. “The recruitment has been excellent. We could have 10,000 participants by the end of March, which would be amazing. I’m really pleased with how well the availability of the dataset and the biological samples [blood] has worked out. In other words, people are using the data, and the data is available through the website. It’s a great example of making data available quickly.”

What’s been the impact?

“We’ve been actively assisting three clinical trials that have been going on – PRIDE, Amaryllis, and LEGATO – with their recruitment,” Giuliano continued. “We have released our second periodic dataset, with 4,150 participants. There are 28 projects that are currently using Enroll-HD data, to answer different research questions. We’ve been actively distributing biological samples for a variety of projects.”

As a result of Enroll-HD, scientists are deepening their understanding of the disease, and doctors are finding ways to improve care.

Enroll-HD contributes directly to the quest for treatments. The larger the number of potential clinical trial volunteers, the greater the chance that trial administrators can enlist the required number for each trial. The number of HD trials has increased each year, increasing the demand for volunteers. Without the trials and the volunteers, scientists can’t test treatments.

Joe Giuliano (left) and Gene Veritas at a 2015 CHDI conference

Challenges in Latin America

On the downside, in one key region, Latin America, Enroll-HD has progressed “very slowly,” Giuliano said. So far, Enroll-HD is only operating in Argentina and Chile.

In October 2015, the National Research Ethics Commission in Brazil – the world’s sixth largest nation, with an estimated 20,000 HD-affected individuals – rejected the proposal to set up Enroll-HD there.

“Obviously we were very disappointed,” Giuliano said. “I think the National Research Ethics Commission rejected based on some areas where there was a perception that the Enroll-HD study was not aligned well with some of Brazil’s legal precedents.”

However, Giuliano said that Enroll-HD will step up efforts to involve Latin America’s HD families. With growing interest in Colombia, that country be the next to join Enroll-HD, he said.

“We’re working harder than ever,” Giuliano affirmed. “You haven’t heard the end of us in Brazil. We’re really committed to Latin America. Many of us believe that Latin America, like in the beginning of their history of HD research in Venezuela, which played an important role – now in the later stages of HD research it’s going to resurge, reawaken, and become an important player in HD research again.”

In a future article I will explore the Brazil decision in depth as well as ways HD families can push for greater acceptance of Enroll-HD there and in other countries of the region.

Building a common cause

As I approach the inevitable onset of HD and feel many of the other effects of normal aging, I realize more than ever the need to stay in shape via a healthy diet, daily stretching and aerobics, meditation and spirituality, and psychotherapy.

Without health, I cannot work, dedicate myself to my family, or advocate for the HD cause.

Caregivers, the "HD warriors" who enter the trenches each day, must also seek opportunities for respite.

With the significant progress towards HD treatments of recent years and growing awareness of the importance of HD and other neurological disorders, advocates have a busier agenda than ever.

I am thrilled to assist HD research and the implementation of the critical clinical trials by taking part in Enroll-HD.

After following the HD movement in Brazil for two decades and participating in the historic sixth World Congress on Huntington’s Disease there in September 2013, I aim to join my Brazilian HD brothers and sisters to advocate for reconsideration of the government’s rejection of Enroll-HD.

We must not lose the momentum in Brazil and Latin America!

Only by building this common cause can we ultimately defeat HD.

Friday, January 08, 2016

A key Huntington’s disease trial remedy gets Orphan Drug Designation, as yet another young life is cut short

Ionis Pharmaceuticals, Inc. (formerly Isis Pharmaceuticals) has achieved another milestone in its search for a treatment for Huntington’s disease: on January 5 the company announced that the U.S. Food and Drug Administration (FDA) granted Orphan Drug Designation for its gene-silencing drug, currently under study in a clinical trial in Europe and Canada.

The FDA designation, intended to facilitate development of the test drug IONIS-HTTRx  by offering financial incentives and assistance, could not come at a better time. Huntington’s disease patients – like 18-year-old Terry Leach of San Diego, who died the morning of January 2 – continue to succumb to this devastating, untreatable disorder.

“Although the toxic protein produced from the huntingtin (HTT) gene in HD patients has been a target of interest for many years, IONIS-HTTRx is the first therapy to enter clinical development that is designed to treat the underlying cause of this fatal disease,” Frank Bennett, Ph.D., Ionis’s senior vice president of research, said in a company press release. “The granting of Orphan Drug Designation in both the U.S. and Europe highlights the significant need for a drug that could transform the treatment of HD.”

HD-affected Phase I clinical trial volunteers in London received the first dosing of IONIS-HTTRx in the October 2015 (click here to read more). IONIS-HTTRx could potentially reduce, partly reverse, and even prevent symptoms.

Likely ending in 2017, Phase I is testing primarily for safety and tolerability. If it is successful, Phase II and III trials measuring the drug efficacy’s would ensue. Together the three phases of a trial typically take at least five years. If the trial is successful, a drug could become available around 2020.

Frank Bennett, Ph.D. (photo by Dr. Ed Wild)

Increased dialogue, helpful benefits

“We were pretty excited to get Orphan Drug Designation,” Kristina Bowyer, Ionis’s executive director of patient advocacy, said in a phone interview on January 5. Ionis is based in Carlsbad, CA.

The designation means that the FDA recognizes “the severity of the disease and the limited population,” she noted.

The designation creates an opportunity for increased dialogue between Ionis and the FDA regarding the IONIS-HTTRx clinical trial, Bowyer explained.

Such extra communication can help resolve the unique issues of orphan disease trials. Because an orphan disease like HD involves fewer than 200,000 patients and very specific approaches to treatments, the design of clinical trials is atypical, Bowyer said. The smaller number of potential volunteers also means that the FDA might have to approve a smaller than normal trial, and sometimes perhaps even a faster trial, she added.

“It’s an area where our technology is well-suited,” Bowyer continued, referring to the antisense oligonucleotides that form the backbone of all Ionis drugs. “We have been able to focus on several rare diseases with a known target.”

By law, as outlined in the press release and in an e-mail from Bowyer, the Orphan Drug Designation includes significant financial benefits for Ionis: seven years of market exclusivity in the U.S. if the FDA approves the drug, tax credits related to clinical trial expenses, FDA assistance in clinical trial design, and a waiver of Prescription Drug User Fee Act filing fees – over $1 million per drug as of fiscal year 2009.

“These benefits help manufacturers recover the costs of developing a drug for small numbers of people,” Bowyer wrote. The Orphan Drug Act was signed into law in 1983.

Kristina Bowyer (photo by Gene Veritas)

Trial ‘moving along well’

In IONIS-HTTRx, HTT stands for the gene huntingtin, and Rx for medical treatment. The train has just recently begun, so, Ionis has reported no official update at this time.

“Everything is moving along very well,” Bowyer said.

The new name

Ionis has also adapted well to its name change, announced on December 18, 2015, in response to concerns about confusing the name Isis Pharmaceuticals, Inc., with the acronym “ISIS” used in the English-language media for the Middle Eastern terrorist organization, the Islamic State. Isis Pharmaceuticals was founded in 1989.

“We want people when they hear or say our name to think about the incredible drugs we’re developing and not a terrorist group,” Wade Walke, Ph.D., vice president of communications and investor relations, told the press.

Ionis chose its new name based on employee suggestions.

“It seemed to me that everybody came together and decided that Ionis was a nice-sounding, feeling name, as soon as someone hit on it,” said Stanley Crooke, M.D., Ph.D., Ionis’s chairman of the board and CEO. The new moniker is a so-called empty vessel name and has no inherent meaning other than what the company does, he added.

Said Dr. Crooke: “We’re here for the patients. We’re not here for our name.”

(Disclosure: I hold a symbolic amount of Ionis shares.)

The Ionis logo

Too late for Terry, other ‘HD angels’

I remember that Dr. Crooke spoke the same phrase – “We’re here for the patients” – when I met him briefly during one of my first visits to the company in the late 2000s.

I also remember visiting Terry Leach on Labor Day 2015. He was slowly but inexorably slipping away from the ravages of juvenile HD, a particularly devastating form of the disease (click here to read more about my visit).

Nevertheless, I was still shocked by his death on January 2.

What a horrible time to lose a family member. New Year’s will forever remind Terry’s mother Angela and his siblings of his passing.

My immediate reaction that morning was one of intense anger.

No 18-year-old should die!

Having had the privilege of knowing Terry and his family, I felt that I had failed as an advocate to speed the progress towards treatments.

Why hadn’t the Ionis trial come in time to save Terry and the other “Huntington’s disease angels” who have passed in recent weeks?

I know that HD researchers may have similar thoughts, as they work with the specter of this killer disease ever looming.

Terry Leach (family photo)

Keeping the faith

Later in the day, knowing that I needed to transcend my anger and sadness, I recalled that a new year always brings hope. As I took a long, strenuous walk with my dog through our hilly neighborhood, I renewed my resolve to fight HD in 2016.

I spoke to Angela a few times that weekend. Instead of a wake and church service, the family will hold a remembrance for Terry at the family home on January 16. A Christian minister will preside.

At Angela’s request, I wrote some words for the back of the remembrance cards she’s having made: “With his infectious smile and fortitude, Terry set an example for all to follow. His life was short, but full of love and joy. He is now free to walk with the Lord.”

Understandably, Angela was too drained to talk much. She did confirm that Terry – despite his inability to talk, his confinement to a wheelchair, and years of ingesting food through a feeding tube – had achieved his high school diploma. He had attended school through mid-2015, receiving assistance in a program for the disabled.

I asked Angela if she had any words for the HD community.

She said: “Just to keep their faith.”

Angela Leach in 2012 holding artist Lee Ellingson's drawing of her son Terry as "SuperTerry," the superhero who knocks out Huntington's disease (photo by Gene Veritas)

Wednesday, December 30, 2015

‘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.