Junior Seau, Super Sunday, and our most important natural resource

As America prepares to celebrate the annual ritual of brutal competition known as the Super Bowl, the negative consequences of football on the brain have come under intense scrutiny.

On January 23, the family of Junior Seau – the famed 43-year-old former linebacker who committed suicide last May after 20 seasons of professional play – sued the National Football League (NFL) over the damage to Seau’s brain caused by concussions.

The family’s action came less than two weeks after the news that researchers at the National Institutes of Health (NIH), studying tissue from his donated brain, determined that he had suffered from chronic traumatic encephalopathy (CTE), a degenerative brain disease.

Junior Seau in the uniform of his final team, the New England Patriots 

In recent years, studies of the brains of dozens of other deceased players, including two who killed themselves, have revealed CTE.

Since August 2011, some 190 brain-damage suits have been filed representing more than 4,000 former players alleging negligence by the NFL. A federal court has consolidated those suits. The Seau family has not decided whether it will enter the joint suit.

According to Seau’s son Tyler and Seau’s ex-wife Gina, Seau’s behavior included depression, wild mood swings, forgetfulness, irrationality, and insomnia.

The HD community’s outlook

Like few others, those of us in the Huntington’s disease community comprehend the brain’s vulnerabilities.

In addition to many other problems, all of the symptoms seen in Seau occur with HD.

Suicide is also all too familiar to the HD community: it is the second leading cause of death in HD patients.

Over some 15 years, I watched HD rob my mother’s ability to walk, talk, think, and eat, reducing her to a mere shadow of herself as it killed her brain cells.

Since learning of my own risk for the disease in 1995, and especially after testing positive for the HD gene in 1999, I have strived to prevent the inevitable onset of symptoms by practicing good brain health (click here to read more) and learning how HD harms the brain (as reflected in numerous articles in this blog).

A more critical view of football

I’ve followed football on and off since my childhood in Ohio, where high school, college and professional football are hugely popular. When the San Diego Chargers – where Seau played 13 seasons – began supporting the HD cause in the late 1990s, I renewed my interest in the sport (click here to read about my enthusiasm).

However, as my knowledge of brain degeneration increased, I developed a more critical view of football’s violent nature. Nowadays I wince when I see a player hit hard on the head.

I don’t wish on anybody the ravages of HD – nor the degeneration of the brain that can occur from head injuries, whether from a bomb blast, a hockey punch, or a devastating tackle. President Obama recently said that, “if I had a son, I’d have to think long and hard before I let him play football.” I too am glad my daughter is not at risk to play a violent sport, although I do worry when she competes on the soccer field.

During remarks at the 2011 gala of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego), NFL Commissioner Roger Goodell recognized the need to make football “safer.”

Needed: a national campaign

It may be impossible for public opinion to remove the fatal violence from a multi-billion-dollar industry that enthralls tens of millions of fans and resonates with our often bellicose culture. In the words of one observer, pro football is “America’s favorite blood sport.”

However, the player lawsuits could affect the owners’ profit margins, harm the league’s prestige, and force some measure of reform.

In response to the burgeoning concern about head injuries, the NFL last September donated $30 million to the NIH for research on the brain and other medical issues. In addition, as required by its collective bargaining agreement with the players’ association, the league has also announced an additional $100 million in planned spending on medical research.

In a commentary on the 2011 HDSA-San Diego gala, I expressed hope that the “NFL will make brain research a national priority at a time when HD, Alzheimer’s, and other brain disorders are beginning to strain our resources with a massive caregiving burden. Goodell, the NFL teams, and the league hold great sway in our society and have the power to mobilize people in a grand cause.”

Indeed, we need much more than $130 million and an NFL commissioner for this effort. We need a national campaign for the brain, including education about brain health and incentives for young people to become brain researchers.

As we cheer on the players on Super Sunday, let’s also remember the devastating impacts of business as usual – and to cheer for the protection of our most important natural resource: our brains.

Bin Laden and HD

Most Americans will always remember exactly where they were during the 9/11 terrorist attacks.

And most of us will probably remember exactly what we were doing when word came of 9/11 mastermind Osama Bin Laden’s killing on May 1, 2011.

I was checking HD-related e-mail. “No bearing on HD… Thank God Osama Bin Laden is DEAD,” read a message from a member of the Facebook discussion group called “HD Family.”

I immediately jumped to CNN.com to confirm the report. I shouted the news to my wife in another room, where she was getting our 10-year-old daughter ready for bed.

“What a relief!” my wife and I told each other as I rushed to put the TV on CNN.

Riveted to the screen, we watched President Barack Obama’s announcement.

I could feel the two of us being transported back nearly a decade, when we spent so many evenings in that same room anxiously watching the television and worrying what other atrocities Bin Laden might perpetrate upon the nation.

A cause hampered

In fact, Bin Laden did have an enormous – if not always direct – bearing on many facets of American life – including the cause to eliminate Huntington’s disease.

In the economic boom of the 1990s, as scientists got their first inklings of possible treatments for HD in the wake of the discovery of the HD gene (1993), the cause started to build substantial momentum under the leadership of the Huntington’s Disease Society of America (HDSA) and the Hereditary Disease Foundation.

Even the tech stock crash of 2000 didn’t seem to threaten the promise of new research.

But Bin Laden’s attacks on the World Trade Center and the Pentagon struck at the heart of our financial and military might. And, as I feared, they diverted the national focus towards security issues and away from philanthropic activities and medical research, both crucial in the fight against HD.

Thus, like many Americans, I took the attacks personally. For the first time that I could remember, I cried for our country.

My worst fears

In June 1999, fewer than two years before 9/11, I had tested positive for HD. In January 2000 our daughter tested negative in the womb. So I was acutely aware of the threat posed by the defective huntingtin gene.

The 9/11 attacks seemed to dash all hope of a quick solution to HD.

I was angry at the Bin Laden terrorists for disrupting our lives and the promise of progress.

I felt especially forlorn about my own gene-positive status, because my mother, who had already been suffering from HD for at least a decade, was rapidly declining and could no longer talk.

As I told a friend at the time, my worst fears had come true: a cataclysmic event threatened to break the back of the nation, perhaps postponing the discovery of a treatment or cure to a date well beyond the start of my inevitable HD symptoms.

But, like the rest of the country, our local HDSA chapter somehow moved ahead, and we proceeded with our plans to raise awareness and funds.

On September 20, 2001, I volunteered at a fundraiser at a small amusement park that brought in $5,000 for HDSA-San Diego. I remember the strange mixture of emotions as I hustled around the park and worried about terrorism.

Exactly one month after 9/11, I attended our chapter’s very first Celebration of Hope Dinner. We raised almost $63,000 – about $10,000 more than our goal.

Generosity and terror

In December 2001, still caught up in the whirlwind of 9/11, I wrote an editorial for our chapter newsletter titled “Generosity and Terror”:

The most immediate concern is about funding. The attacks quickly focused Americans’ sympathies on the plight of the thousands of victims and their families. We mourn these horrible losses and support the efforts to bring the killers to justice.

The attacks also harmed our economy, and the outpouring of sympathy has diverted attention from many other charitable activities.

Government at all levels shifted its focus to dealing with the aftermath of the attacks and protecting the nation against future threats. We are at war. This all means that the government is spending – and will likely continue to spend for years to come – tens of billions of dollars for military defense and national security.

This combination of difficulties could undermine long-term philanthropic giving and reduce the level of activities of many charities and programs that fight disease.

But HDSA-SD supporters have suggested that the reality can and should be otherwise. Within weeks of the attacks they helped us raise tens of thousands of dollars. Other HDSA events went on as planned elsewhere. This is a resounding message that generosity and compassion will overcome the hateful politics of terror. The American spirit is to move ahead, no matter what the odds.

We thank those who have supported us during these difficult moments.

And we urge our leaders to remember that a great nation survives not only with a strong defense, but through the continuation of its programs for the betterment of human life. That includes funding for the National Institutes of Health and other initiatives against disease. In the campaign against terror we must not lose our public soul of domestic concern and generosity by overspending on weapons.

Strong health is our most basic prerequisite for survival as a nation. In the fight to stop disease, the test tube will topple terror, MDs will outlast murderers, and veneration of life will overcome the cynicism of violence.

Ups and downs of philanthropy

American charitable giving slumped from 2001 to 2003, but grew to record levels by 2007.

During the early 2000s downturn, HDSA also took a hit. Previous, ambitious plans for a $20 million annual budget fell by the wayside. Public advocacy languished. And, for a number of reasons, HDSA fell into financial disarray. Only now is financial stability in sight.

Under new leadership, HDSA is seeking to reconfigure itself as a community service organization for HD families. (May is Huntington’s Disease Awareness Month, and I’ll be writing soon on HDSA’s outlook.)

CHDI: a godsend

Meanwhile, in the past six years the CHDI Foundation, Inc. has invested heavily in potential treatments and a cure. Its budget will reach an estimated $100 million this year.

Informally known as the “cure Huntington’s disease initiative,” CHDI has been a godsend for the HD community. It is partnering with biotech companies, the government, and academic labs to speed up the hunt for effective drugs.

Thanks to a wealthy, anonymous donor, CHDI has kept spending at high levels despite the deep recession of 2007-2009, occasioned by a record drop in charitable giving that dwarfed the post-9/11 slump.

Thus, while in the short run Bin Laden’s attacks impacted the HD cause, in the long run the emergence of CHDI trumped terrorism.

In 2001 the 9/11 attacks had caused me to lose much of my hope for an effective treatment or cure. In 2011 I now have a level of hope previously unimaginable – in terms of the organizational and financial commitment to the cure and the research progress.

Unity and ingenuity

In his speech about Bin Laden’s killing, President Obama appealed for a renewal of national unity and reminded Americans that we “can do whatever we set our mind to.”

Listening to the president, I felt proud to be an American and rejoiced in his optimism about our future.

American ingenuity can bring about better care for our HD patients and their families and the treatments that I and tens of thousands of other gene-positive and HD-affected people so desperately need to stave of the devastation of our brains and eventual premature death.

On May 6, I will travel to Sacramento, CA, to interview a team of scientists working on a potential Huntington’s disease stem-cell treatment under the leadership of Dr. Jan Nolta. The next day I will deliver a speech on my experiences as a gene-positive HD activist at the annual convention of HDSA’s Northern California Chapter.

On May 17, I will give a similar speech at Alnylam Pharmaceuticals, which aims in the next year or so to begin Phase I clinical trials for a potentially revolutionary HD treatment.

HDSA, CHDI, Dr. Nolta, Alnylam, and so many other scientists could together change the history of Huntington’s disease and of science and medicine.

It took America ten years to get Bin Laden. With similar determination we can defeat Huntington’s disease in the next ten years.