Friday, February 03, 2017

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.

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.

Monday, January 23, 2017

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 dont 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. Its hard for me to see my mom act in a more childish manner than my three-year-old daughter. Its 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 elses.

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 Huntingtons 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. Its 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.

Dont 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)

Tuesday, November 22, 2016

This Thanksgiving, let’s show gratitude for disease researchers and drug hunters

This Thanksgiving, lets pause to show gratitude for the many researchers and drug developers in America and around the world who strive to treat diseases and improve the quality of health for all.

As we await the first effective treatment for one of the worlds cruelest maladies, we in the Huntingtons disease community feel especially grateful for the efforts of the scientific, medical, and biotech communities to bring relief from HDs devastating cognitive, motor, and behavioral symptoms.

Our cause is urgent: HD strikes in the prime of life and is ultimately fatal. Stopping HD would mark a historic step in the quest to conquer brain diseases.

As a presymptomatic carrier of the HD gene, I found inspiration for Thanksgiving 2016 in the powerful speech last February by HD advocates Astri Arnesen and Svein Olaf Olsen at the 11th Annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc.

Leaders of the HD cause in their native Norway and in the European Huntington Association (EHA), this indomitable couple bared their souls about marital commitment, denial, genetic testing, and raising a family.

Their goal: to motivate and demonstrate appreciation for the audience of more than 200 world-class HD researchers, physicians, and drug company executives.

Svein Olaf Olsen (left) and Asti Arnesen at the 11 Annual HD Therapeutics Conference. Astri is president of the EHA and Svein Olaf a member at large of its board (photo by Gene Veritas, aka Kenneth P. Serbin)

No questions asked

Astri and Svein Olaf titled their presentation HD more than a disease!

HD is much more than a disease, Astri said leading off. It affects every part of your life, and its really a part of who you are.

Astris family traced back HD to a maternal great-grandmother. Her maternal grandfather and her mother also developed the disease.

However, as is so often the case in HD, nobody in Astris family discussed the condition, even though they witnessed relatives debilitating symptoms each day.

You just sensed: no questions should be asked, Astri explained. My mother grew up in this family.

A special education teacher, Astri in the 1980s fell in love with a co-worker, Svein Olaf. She divorced her husband a brief marriage she had entered to escape caring for her HD-stricken mother and started a relationship with Svein Olaf.

The greatest gift of all

Svein Olaf knew of Astris 50-50 chance of carrying the HD gene. However, the young couple didnt discuss HD much. Without Astri getting tested, they had two daughters in the early 1990s, before the discovery of the huntingtin gene in 1993 and the development of a definitive genetic test.

After their older daughter Jannike turned 18 in 2009, she wanted to get tested for HD.

I said to her, Thats not possible,’” Astri said. “‘I could not by any means let you go through that. I will do the test [first]. So the day before Christmas, I called the doctor.

The process took weeks. The waiting and uncertainty were so traumatic, Svein Olaf told the audience, that afterwards he could not remember anything about the tests. Nothing.

When the couple visited the clinic to obtain the results, the doctor practically came running to Astri. You dont have the gene! she exclaimed.

Svein Olaf crashed his hand on a table. At that moment, he vowed to marry Astri, something they had planned for years but always put off.

It was really the most amazing thing to come home and tell our daughters that there is no risk anymore, Astri remembered. That was really for me the most important thing. You can handle your own situation, but knowing that I hadnt passed it on to them was really the greatest gift of all.

The hope of science

Since then the couple have dedicated themselves to the HD cause in part because Astris youngest sibling, Arne Dag, was stricken with HD.

He was a brilliant young man, Astri said. He was really teaching my father, an engineer, how to fix the car when he was six years old. So he was a future engineer coming up. But in his early 20s, hes starting to have trouble. He doesnt manage to finish his studies.

In a typical symptom of HD, Arne Dag became deeply depressed. He was formally diagnosed in 2005.

At the 2010 meeting of the European Medicines Agency (the counterpart of the U.S. Food and Drug Administration) in London, Astri showed a video of a short interview she did with her brother.

In the clip, Arne Dag struggles to speak, and his body twists and turns because of chorea, the involuntary movements caused by HD.

Arne Dag tells Astri that he wants to participate in a clinical trial as soon as possible. She asks him about his hopes for the future.

I hope that science is on my side, he says, laughing.

Participants at the 11th Annual HD Therapeutics Conference, Palm Springs, CA, February 2016 (photo by Gene Veritas)

Thanking the researchers

Arne Dag died in April 2015 at the age of 46.

But he hoped, Astri told the conference attendees. And that was really important in his life. He hoped for the hard work you [scientists] are doing to give results for him and for us.

As a slide showing infants appeared in the background, she added: And thats what we are fighting for, and thats why we are so involved in this work. Because now, its not about him. Its not about me. Its about all these lovely children and grown-ups living with a risk, living with the gene, and who really put their hope on you and your work.

And no matter how long it takes, that is so important in our daily lives. Knowing that you go to work really makes our day easier. For me, hope has really been my way of coping and dealing with it, and it is for a lot of us. We are many, many out there who support you, who need you, and who are waiting for results.

So we want to thank you so much. Its amazing to see how many fantastic, brilliant researchers that are in this field. We are so grateful for that.

Happy Thanksgiving!

You can watch Astri and Svein Olafs presentation in the video below.