At HDF symposium, a Huntington’s disease ‘hero’ who prays for scientists to find a cure

 

Recognizing the invaluable input from people living with Huntington’s disease, the Hereditary Disease Foundation (HDF) featured a conversation with Michael, a 62-year-old HD-affected Boston man, at its biennial conference of scientists seeking therapies for this incurable disorder.

 

Michael was interviewed about his HD symptoms by neurologist Diana Rosas, M.D., of Harvard University and Massachusetts General Hospital.

 

Titled “Living with Huntington’s Disease: Family Perspectives,” this HDF tradition of focusing on an HD-affected person took place on August 8 during HD2024: Milton Wexler Biennial Symposium. Convening some 300 researchers, biopharma officials, and advocates, the event ran August 7-10 at the Royal Sonesta Boston Hotel in Cambridge, MA.

 

HD usually impedes speech. I saw that affecting my mother. She died of the disorder at 68 in 2006, after two decades of symptoms, and I carry the HD gene.

 

Michael struggled but persistently formed words and sentences. “I pray for everybody,” Michael said, referring to the quest for therapies, during the Q&A after the interview.

 

Michael’s former wife attended in support of his advocacy, as did his two sons, both in their 20s.

 

Michael (left), who has Huntington's disease, and his physician, Diana Rosas, M.D. (photo by Gene Veritas, aka Kenneth P. Serbin)

 

A diagnosis in 2017

 

Born in Chicago, Michael grew up in Princeton, NJ. As a young adult he moved to Boston, where he studied to become a French chef. He spent a year traveling through France to master his profession. He worked in several restaurants in Boston and also at Gillette Stadium for the NFL’s New England Patriots.

 

Michael believes his father had HD, although he was never formally diagnosed, due to the limited knowledge about the disease as Michael grew up in the 1970s. His father was also an alcoholic. Michael’s aunt also suffered from HD and went into a care home.

 

Michael was diagnosed with HD in 2017.

 

It became ‘too dangerous and messy’ to cook

 

Dr. Rosas is Michael’s physician. As she noted, many lab researchers have little contact with HD-affected individuals. The interview aimed to inform them of the complex triad of symptoms and many psychosocial challenges posed by HD.

 

Dr. Rosas asked Michael to address questions about the first type of symptoms: movement disorders, including involuntary movements.

 

These symptoms, Michael explained, caused him to stop cooking: it had become “too dangerous and messy.” It also became harder to dress himself.

 

Typical of HD patients (including my mother), Michael has suffered several serious falls, leading to a broken wrist, ribs, neck, a punctured lung, and a subdural hematoma (a serious injury to the head). Though he had participated in research conducted by Dr. Rosas, the hematoma has prevented him from participating in clinical trials, because of a restriction by pharmaceutical companies.

 

“I like helping out however I can,” he said of his participation in research.

 

Michael, who lives alone, does have a chocolate labrador retriever that he walks.

 

Michael used to drink alcohol daily and smoke heavily. The drinking caused one of his falls, he said. He quit both habits. Alcohol was a “big part” of his life, he recalled, adding that he doesn’t “miss the days of drinking.”

 

A greatly modified daily routine

 

Dr. Rosas brought up another part of the HD triad: cognitive loss, executive dysfunction, and failing memory.

 

Michael observed that his loss of executive function prevented him from cooking, which had required preparing items and “lots of multitasking.”

 

Though he “can remember my bank card number,” he has ongoing difficulties with memory. He pays his cable and phone bills but has an accountant to assist with his overall finances. He still cares for two salt-water fish tanks, an activity he took up in his 20s.

 

Michael arises at 6 a.m., when he takes his medications: risperidone, an antipsychotic, twice daily; deluxotine for depression; and a multi-vitamin. He also takes medical marijuana.

 

After some small accidents, Michael stopped driving, now relying on Uber.

 

Overcoming impulsiveness and depression

 

Regarding the third part of the triad, psychiatric and mood disorders, Dr. Rosas observed that HD-affected individuals can become fixated or impulsive.

 

Michael agreed that this has affected him, recalling that his drinking also led him to be “very impulsive.” He also suffers from depression. Many HD-affected people become angry when faced with unexpected changes in their daily routine. Michael has also experienced this type of anger. Getting over the anger can take time, he added.

 

Like many of the affected, Michael also has difficulties sleeping. His drinking had exacerbated this problem.

 

“It’s like your mind and body are always on with HD,” he observed.

 

Indeed, HD-affected individuals burn lots of calories. Dr. Rosas recommends five meals per day, although Michael said he eats three to four. 

 

Dr. Rosas interviews Michael about his HD symptoms (photo by Gene Veritas).

 

‘You are a hero!”

 

In the Q&A following the interview, Michael expanded on aspects of his life.

 

One has involved his relationship with his ex-wife and sons. Michael said that the divorce occurred around the time of his diagnosis and was “probably” the result of it.

 

Michael saluted his former spouse as “one of my huge supporters. I haven’t had a girlfriend after my divorce. We were married for 24 years.”

 

He said that he has “two great kids” who are “successful and happy.”

 

Michael also socializes with friends, some of them also divorced.

 

Asked about the work of the researchers, Michael said, “I love them to death.” He added that he is looking forward to new advances.

 

Dr. Rosas asked what most worries Michael about HD.

 

“I suppose going to a home, going to an assisted living situation,” he said.

 

His capacity to manage on his own prompted praise. “You are a hero!” declared Tacie Fox, a family advocate and co-trustee of The Fox Family Foundation (which supports HD research), leading the audience to applaud enthusiastically.

 

“It feels like you have somehow navigated in a way that brings you joy in your life,” she added. “We’re struggling with that with my little sister. She watches a lot of TV. I’m in awe that you, living on your own, have marshaled that inner strength.”

 

The key role of modifier genes

 

At 64, I have been extremely fortunate to have not been diagnosed with HD. It is likely that I have benefited from modifier genes and other factors.

 

Like the rest of the audience, I was deeply moved by Michael’s courage and perseverance in living with HD.

 

I hope that when the inevitable symptoms arrive, I will have the same strength as Michael.

 

Stay tuned for upcoming articles on the conference proceedings, including deep discussion of the key role of modifier genes in the search for therapies.

 

Disclosure: the Hereditary Disease Foundation covered my travel expenses.

Scientists interacting with Huntington’s disease patients in the quest for therapies

 

In the quest for Huntington’s disease therapies, scientists have found key intellectual fuel for understanding the genetics of this fatal neurodegenerative disorder and developing therapies.

 

A brainstorming strategy became the trademark of the HD-focused Hereditary Disease Foundation (HDF), founded in 1974 by leading Los Angeles psychoanalyst and HD activist Milton Wexler as an offshoot of the Huntington’s Disease Society of America (HDSA).

 

Wexler organized multidisciplinary small workshops of scientists aimed at spontaneous discussion – as opposed to dry scientific presentations with slides – to search for the HD gene and develop treatments (click here to read more).

 

Allan Tobin, Ph.D., the former director of the Brain Research Institute at the University of California, Los Angeles (UCLA), ran hundreds of workshops for the HDF and later for CHDI Foundation, Inc. (CHDI), today the main private funder of HD therapeutic research.

 

Involving the affected

 

Many scientists have had little or no contact with HD families, so the HDF has included individuals from those families in its workshops. I was exposed to this approach in 2012, when Dr. Tobin transformed my desire to simply blog about a CHDI workshop into an event that included a 90-minute discussion of HD’s health and social ramifications based on my family’s story.

 

On the morning of January 30, I once again interacted with HD scientists, answering an invitation from HDF CEO Meghan Donaldson to offer my “perspective as both a family member and someone who is gene-positive,” aiming to help connect researchers “to the patients and the disease and to strengthen their resolve for finding a treatment.”

 

I not only spoke about my HD journey but also exchanged ideas with the scientists about their mission of developing therapies and also the many challenges faced by the HD community.

 

For me, exploring science with researchers serves as both mental enrichment and coping mechanism as I strive to forestall what research predicts will be my inevitable HD onset. Of course, I hoped to contribute to the scientific mission.

 

At the workshop: seated, from left to right, Mahmoud Pouladi, M.Sc., Ph.D., Osama Al Dalahmah, M.D., Ph.D., Ashley Robbins, Gene Veritas (aka Kenneth P. Serbin), Sarah Hernandez, Ph.D., William Yang, M.D., Ph.D. Standing, from left to right, Xinhong Chen, Andrew Yoo, Ph.D., Anton Reiner, Ph.D., Baljit Khakh, Ph.D., Nicole Calakos, M.D., Ph.D., Ed Lein, Ph.D., Beverly Davidson, Ph.D., Nathaniel Heintz, Ph.D., Harry Orr, Ph.D., Leslie Thompson, Ph.D., Myriam Heiman, Ph.D., Shawn Davidson, Ph.D., Steven Finkbeiner, M.D., Ph.D., Roy Maimon, Ph.D. (photo by Julie Porter, HDF) (Click on the image to enlarge it.)

 

Pondering modifier genes and a proactive approach

 

My 80-minute encounter with 20 scientists kicked off the two-day HDF Milton Wexler Interdisciplinary Workshop, held at the Huntley Hotel in Santa Monica, CA.

 

To provide background, before the meeting HDF Director of Research Programs Sarah Hernandez, Ph.D., sent the participants a copy of my article “Striving for a Realistic and Unapologetic View of Huntington’s Disease” from the Journal of Huntington’s Disease.

 

With the HDF’s permission, I recorded my remarks and Q & A with the scientists. As is customary, the confidential, scientific portion of the workshop was not recorded, to encourage uninhibited brainstorming.

 

After Dr. Sarah Hernandez introduced me, I gave an overview of my family’s fight against HD, including my mother’s diagnosis with the disorder in 1995, the genetic test revealing my risk in 1999, my gradual exit from the “terrible and lonely HD closet,” and strategies for delaying onset.

 

I discussed the possible key role of modifier genes in enabling me to reach the age of 64 still fully functioning – in contrast with my mother, whose symptoms began in her late 40s, ending with her death at the age of 68 (click here to read more).

 

Just before the meeting, I had discussed with two of the scientists that “maybe I should get my genome sequenced and find out if I actually have any of those modifier genes,” I told the scientists.

 

I noted, however, that no routine genetic tests exist for these genes and that establishing them might “open a whole new Pandora's box of bioethical considerations,” given the potential for unsettling messages. We'd have to have new protocols.”

 

“So, yes, I think it might be good to have those tests, but we've got to think very carefully about jumping into that,” I said. “But maybe for science, I could do my own whole genome sequence and write a blog article about it and analyze my modifier genes.”

 

I stressed that a “proactive approach is absolutely essential.” That option was unavailable to my mother, the first person to develop HD in an extended family with no knowledge of the disease.

 

Seeking to manage HD

 

The scientists probed various facets of my family’s HD experience and my advocacy.

 

I explained the importance of the HDSA-San Diego support group in providing vital information about such matters as genetic testing and obtaining long-term care insurance. I also discussed my timeline for testing and how I did so anonymously. I reflected on how my colleagues at the University of San Diego reacted positively to my exit from the closet and the full-throated advocacy that I could now pursue.

 

The concerns about discrimination led me to underscore the importance of the Affordable Care Act and the Genetic Information Nondiscrimination Act in eliminating discrimination against those with preexisting conditions.

 

Some wanted to know about the very difficult social and psychological challenges involved in genetic testing, and how to convince those worried about HD to reach out to medical professionals. 

 

Given how devastating the discovery of HD in a family can be, I advocated a “gentle” and gradual approach to getting people involved, recalling that research studies such as Enroll-HD allow people to participate anonymously and without knowing their genetic test results.

 

I pointed out that, despite the fear and devastation associated with HD, today the HD community has real hopes for clinical trials of HD-specific remedies. Such hope did not exist a quarter-century ago. As I tell younger people just starting their struggle against HD, although “there may not be the magic bullet,” HD might ultimately be “managed like other diseases are managed like heart disease, diabetes, and HIV.”

 

Involving presymptomatic people in trials

 

I was both humbled and thrilled that the scientists wanted my observations on various aspects of the search for therapies.

 

In my opening remarks, I had stated that, in comparison with the start of my HD journey in the late 1990s, thankfully it has been harder for me to track the progress because of so many research and clinical trial programs. In her introduction, Dr. Hernandez noted that I am at work on a biosocial history of the HD movement.

 

UCLA neuroscientist Baljit Khakh, Ph.D., asked whether I could identify “errors” to be avoided or “strengths” to be reproduced, as well as trends worth noting.

 

In response, I expressed my frustration about the lack of opportunity for presymptomatic gene carriers like me to participate in clinical trials. The now defunct Triplet Therapeutics, Inc., had planned such a trial, I observed, and that the Alzheimer’s disease field has had such a trial.

 

“We're a valuable resource,” I said, recognizing that such trials require approval by the U.S. Food and Drug Administration and also involve bioethical and financial considerations.

 

However, I also observed that “the field's done a great job of trying to diversify [drug] targets,” because of the many types of approaches under research.

 

Addressing the cognitive deficit

 

Nathaniel Heintz, Ph.D., of The Rockefeller University asked about the importance of clinical trials to test drugs to treat just symptoms, without modifying the course of the disease. Treatments developed for other diseases, like Parkinson’s, benefit millions, he noted, but does HD as a rare disease face a greater challenge to attract trial volunteers?

 

I observed that HD now has three treatments for chorea, the involuntary, dancelike movements experienced by many of the affected.

 

However, I also pointed out that HD clinical trials are very U.S.- and Europe-based, avoiding important countries such as Brazil, which was not included in Enroll-HD. I observed how HD families in Brazil and other parts of the world are “desperate to participate in clinical trials.”

 

Xinhong Chen, a lab researchers at the California Institute of Technology, touched on another facet of Dr. Heintz’s question: what symptoms do people most want treated to improve their quality of life?

 

I pointed to the importance of reducing the “cognitive deficit” that occurs with HD and prevents people from engaging in daily functions, caring for themselves, and communicating with others. I added that I had hoped to take pridopidine, a pill developed for this purpose. Sadly, the pridopidine trial failed in April 2023.

 

Andrew Yoo, Ph.D., of Washington University in St. Louis, wanted to know how to overcome the lack of interest in HD and related research in his native South Korea.

 

The leadership of the HDF, CHDI, HDSA, and the Huntington Study Group (HSG) should push for greater “diversity” on the international level, I said, suggesting that the HSG could send a delegation to South Korea. Also, advocates and medical personnel can spur action on HD, Alzheimer’s, and other neurodegenerative diseases by alerting people to the caregiving crisis, which is global, I observed.

 

The scientists get down to business

 

I was energized by my exchange with the scientists.

 

After my session, the workshop participants took up the main business of the rest of that day and the next: “cell type specific biology in Huntington’s disease.”

 

That activity was chaired by William Yang, M.D., Ph.D., of UCLA, Myriam Heiman, Ph.D., of the Massachusetts Institute of Technology, and Steven Finkbeiner, M.D., Ph.D., of the University of California, San Francisco.

 

Through their brainstorming – the first session of which I observed – the participants aimed to advance ideas for HD therapies.

 

On January 29, I lunched with Dr. Yang, gave a slide presentation on my advocacy to his research team, and toured his lab. I also interviewed Dr. Yang on his latest research.

 

Stay tuned for my next article: Dr. Yang’s long interest in HD and his enthusiastic outlook for potential therapies.

 

Disclosure: the Hereditary Disease Foundation covered my workshop travel expenses.

 

Gene Veritas (left) with Dr. William Yang in his UCLA office. In the background: a medium spiny neuron, one of the brain cells most affected by Huntington’s disease (photo Nan Wang, Ph.D., of the Yang Research Group).

Happy Thanksgiving! And hail to the pharmaceutical and biotech industries – and the scientists!

Thanksgiving this year is going to be radically different for many Americans, including my family.

 

I will celebrate my favorite holiday just with my wife Regina, home in San Diego.

 

As it has for many Americans, the COVID-19 pandemic has prevented us from hosting our usual small group of friends.

 

After eating a healthy brunch, we plan to have a Zoom call with our HD-free “miracle” daughter Bianca, a junior history major at the University of Pennsylvania. We are ever thankful that Bianca did not have to face the devastating possibility of juvenile HD. We will miss her, but are reassured knowing that she will spend the day with her boyfriend and his immediate family in the East.

 

We also hope to Zoom with some of our local friends. 

 

However, despite the terrible pall cast by the pandemic over the 2020 holiday season, I feel extremely optimistic that researchers will find a highly effective vaccine for the coronavirus.

 

The announcements of preliminary data by Moderna and the team of Pfizer and BioNTech revealed that their vaccine candidates reduced COVID-19 infections by 95 percent in clinical trials.

 

Dr. Anthony Fauci, the director of the National Institutes of Allergies and Infectious Diseases (NIAID), described the Moderna data as “stunningly impressive,” noting that he would have settled for 70-75 percent efficacy in a vaccine.

 

“It is really a spectacular result that I don’t think anybody had anticipated would be this good,” Dr. Fauci said. He had similar praise for the Pfizer/BioNTech data.

 

Both of these trials use genetic approaches: they introduce the virus’s own genes into cells to provoke an immune response.

 

According to the New York Times’ Coronavirus Vaccine Tracker, several dozen other companies have embarked on clinical trial programs using some form of approach based on genetics or other cutting-edge strategies. Only ten projects are making vaccines using the traditional approach of injecting weakened or dead coronaviruses.

 

In all, scientists are testing 54 vaccines in clinical trials, and at least 87 more are under investigation in animals.

 

Genetics-based approaches are familiar to the HD community, where researchers have investigated the potential of gene silencing drugs for more than a decade. Researchers in the lead program, Roche’s historic GENERATION HD1 Phase 3 clinical trial, hope to analyze data in 2022. 

 

When I heard of the initial reports of Moderna’s genetics-based approach, I felt deeply confident that humanity would ultimately defeat the coronavirus. 

 

The potentially record speed in getting a vaccine to the world is testimony to the ingenuity, dedication, and focus of the biotech and pharmaceutical industries, which I have observed with deep interest in my nearly quarter century as an HD advocate and student of the science – and as a writer summarizing the science in simple terms.

 

In October, posting on Facebook an article on the bold Triplet Therapeutics clinical trial program – yet another genetics-based effort – I wrote the following: “Hail to the many imaginative and hard-working companies in America’s pharmaceutical industry!”

 

I also salute the scientists involved, and the many pharmaceutical and biotech firms of other nations engaged in the fight against COVID-19 and HD.

 

Also, we must not forget the millions of doctors, nurses, and other healthcare workers and first responders who have heroically attempted to hold the line against COVID-19, thus giving the researchers the time necessary to develop the vaccines.

 

Thanksgiving is our quintessential American holiday. This year, with the pandemic, it takes on a global significance. Across all cultures and nations, the virus has led us to realize once again our common humanity – and the collective efforts needed to safeguard life for all.

 

 

Photo by Bianca Serbin, taken in fall 2009 at the San Diego Botanic Garden (click here to read more).

Nora Guthrie: we’re all ‘hoping machines’ in the fight against Huntington’s disease

The cause to defeat Huntington’s disease came full circle at the recent HD Therapeutics Conference, where keynote speaker Nora Guthrie recalled the brave struggle against the disease by her father, iconic folk singer Woody Guthrie, and the groundbreaking advocacy of her mother Marjorie, the founder of the Huntington’s Disease Society of America (HDSA).

“We are the hopers and the changers,” said Nora, 68, quoting her father, to the audience of 350 scientists, drug company representatives, and family advocates gathered at the 13th annual meeting in Palm Springs, CA, in late February. “The note of hope is the only note that keeps us from falling to the bottom of the heap of evolution, because about all a human being is anyway is just a hoping machine.”

The conference was sponsored by CHDI Foundation, Inc., the nonprofit virtual biotech dedicated to developing HD treatments. Like a number of past keynoters, Nora preferred not to have her presentation recorded. She interweaved her father’s music – he wrote “This Land is Your Land” – with the family’s struggles against HD.

However, Nora agreed to an interview with me in which she reflected on the early days of HDSA – started in 1967, the year her father succumbed to HD, when she was 17 – and the progress towards treatments.

Nora Guthrie (right) being greeted by Sarah Tabrizi, FRCP, Ph.D., with Blair Leavitt, MDCM, FRCP (left) and Gregory Suter looking on (photo by Gene Veritas, aka Kenneth P. Serbin)

A vast HD ‘tribe’

I was thrilled to meet Nora. Watching and interacting with her helped me connect with a giant of American history as well as with what she called the vast HD “tribe” that Marjorie had started.

Before our formal interview, in conversations with Nora, I also relived key moments in my personal journey with HD.

After her keynote, filled with emotion, I hugged Nora, telling her that my mother had died of HD.

Nora was at first befuddled by my pseudonym, “Gene Veritas.” I explained to her that it meant “the truth in my genes,” a reflection of my condition as an HD gene carrier.

During one dinner, I told how, in the late 1990s, my efforts to get background on the disease and the cause led me to study Woody’s life and watch the 1976 film Bound for Glory, based on his autobiography and portraying his early phase as a drifting folk singer. Nora recalled her personal impressions while on the set.

“I feel a spiritual connection with you and your family,” I told Nora at the outset of our interview. “Thank you for being here, and thank you for speaking out for us, just as your father spoke out for so many people.”

Impressed with the research progress

As I proceeded to my first question, Nora interjected: “Not just speak out, but speak up.”

In that comment, and many of her other responses during the interview, Nora quoted her father or echoed his singular eloquence with her own plays on words and unique phrasing.

I asked Nora what it was like to speak to the scientists.

“For me, it was like a sci-fi movie, because coming from my early years with Huntington’s with my father in the late 1940s and early fifties, when there wasn’t one person you could talk to, not one doctor that knew anything about Huntington’s, not one social worker to help you get through it, not one support group,” she said. “Our family was kind of inventing how to deal with Huntington’s in those days. There were no pamphlets. There were no guidelines. So, we were going day to day, day by day, inventing – trying to be creative, trying to be helpful, trying to figure out even what the symptoms were.”

Nora recalled the first HD benefit concert Majorie organized at Carnegie Hall in New York City in 1968, with Woody’s musician friends

Today, Nora said, just at events like the CHDI conference, hundreds of “young, energetic, and smart” people are focused on developing treatments – all descendants of Marjorie, the “Eve” of the HD movement. To Nora, they represent hope for the community. 

Devoted to preserving her father’s legacy, Nora still seeks to combine music with HD advocacy. She described the concert she organized last summer in Berlin, gathering musicians and HD families and organizations.

“For me, the music and the art and the sciences are one group,” she said.

You can watch the interview in the video below.

A cure: when, not if 

Like all children of an HD-afflicted parent, Nora was born with a 50-50 chance of having inherited the genetic defect. In her talk, she did not broach the issue of genetic testing. We also did not discuss it in our interview. For many in the HD community, that is a private matter. 

At age 68, Nora has passed the age of typical onset. She looks to be in excellent health. According to Woody biographer Ed Cray, Nora declined testing. So did her famous brother Arlo, a musician born three years earlier. Their brother Joady tested negative for HD in the early 2000s. (Two half-siblings died of HD.)

I wished Nora and her extended family the best of health.

Finally, I wanted to know what her parents would say about the advances in HD science, if they were alive today.

"I think the most impressive thing for them is an affirmation of their belief in humanity," Nora said. "That people are interested. That people do care. That a cure is down the road. It's just a question of when, not if."

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.