In times of crisis, Huntington’s and other chronic disease communities provide examples of fortitude

For individuals and families facing Huntington’s and other chronic diseases, daily living often seems like nonstop crisis. These communities, including selfless caregivers, have demonstrated great fortitude.

The current coronavirus pandemic adds another giant, unknown layer to the kind of challenges and suffering many in these communities are already accustomed to.

The country’s reaction to the pandemic and the shutdown of daily routines starkly reminded me of the national climate in the months following the September 11, 2001, terrorist attacks on New York City and Washington, D.C. Resulting in 3,000 deaths, 9/11 led to a temporary grounding of all domestic flights, the fear of subsequent attacks (including nuclear), and panic regarding other, unrelated terrorist threats such as the deliberate spread of highly dangerous anthrax bacteria. The economy also suffered serious long-term effects.

Members of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA), in the bewildering days after 9/11, held a previously planned fundraiser and got ready to hold its first Celebration of Hope Gala.

With so many other, urgent demands on potential donors, we feared people might not remember our needs.

Later that fall, in an editorial in Conquest, our chapter newsletter, I wrote the following:

On September 20, less than two weeks after the crisis, members of the public and local organizations participated in the Third Annual Indy Go-Kart Challenge to raise funds for the cure of HD. Then, on October 11, the one-month anniversary of the attack, several hundred San Diegans took part in the Celebration of Hope Dinner to assist the Center of Excellence for Family Services and Research at the University of California, San Diego. We raised tens of thousands of dollars at these events. Elsewhere in the country other HDSA events went on as planned.

In this manner HDSA and its supporters have sent a resounding message that generosity and compassion are far stronger than the hateful politics of terror. We will move ahead, no matter what the odds are against us. This is the American spirit.

Unprecedented impact on daily life

So far, the coronavirus pandemic has had an unprecedented impact on the United States, with schools, universities, and many other institutions closing or switching to remote, online operations. As of March 15, at least 65 people had died in the U.S., with worst-case scenarios projecting 200,000 to 1.7 million deaths.

The pandemic has changed my workplace unlike any earlier tragedy. After 9/11, no classes were cancelled by my employer, the University of San Diego (USD). In 2003, the devastating Cedar Fire in San Diego County left 15 dead, destroyed 2,820 buildings, and charred more than 280,000 acres. In response, USD shut down for just two weeks and finished the semester normally, with everybody back on campus.

Now, because of the virus, USD has cancelled classes this week and will finish the semester (eight more weeks, plus final exams) online. The University of Pennsylvania, where my HD-free daughter Bianca studies, will do the same. My wife and I are worried that Bianca will not be able to make it home in time before potential travel restrictions.

Each hour, we learn of more victims of the virus and further curtailment of life as we know it.

Impact on the HD community

The global crisis has also impacted the mission of HDSA and individual HD families.

On March 13, HDSA CEO Louise Vetter sent an e-mail to “friends of HDSA” announcing that the organization “holds the well-being of our families, volunteers and staff as our top priority” and will therefore postpone “ALL local HDSA events (educational & fundraising) nationwide” until April 30. That complies with public health recommendations to curtail public gatherings to slow the spread of the coronavirus.

According to Vetter, HDSA still plans to hold its 35th Annual Convention in New Orleans, June 4-6, but will continue to follow the guidance from the Centers for Disease Control, World Health Organization, and state and local health agencies.

HDSA’s national headquarters in New York City is closed. However, the entire staff is working remotely and has the resources “to continue the uninterrupted support of our mission during this time,” Vetter assured.

The Huntington’s Disease Youth Organization postponed its May 2020 international congress in Glasgow, Scotland, to March 2021.

I have accepted an invitation to deliver the keynote address at the 37th National Conference of the Huntington Society of Canada in November, but have been told to hold off on reserving flights until the pandemic’s long-term effects become clear.

Visiting the afflicted

For one HD community member and blogger, Mandi, 33, the pandemic meant that on March 12 she could not visit her 58-year-old HD-stricken father, Danny, at the Missouri nursing home where he resides.

“They are locking all doors for the safety of people there,” wrote Mandi, a dedicated caregiver and herself at risk, but untested, for HD. “Was my first reaction sad I couldn’t see my dad? Sure, but I immediately checked myself. I realized my own selfish want to see my dad was tiny in comparison to keeping the people in the nursing home safe because who knew if I was a carrier since you can have it for over a week and not show symptoms.”

Mandi pointed out how the nursing home’s restriction is “terrifying for those of us with possibilities of losing family.” She wants “to do everything in my power to protect him as I always have.”

However, she concluded: “Until we really know what we are dealing with let’s just take the precautions seriously.”

Danny (left) and Mandi (family photo)

Especially resilient

With the coronavirus pandemic, the world can learn from the example of the HD community and our generous supporters.

We in the HD community, and other neurological disease groups, face relentless adversity. HD grinds down the brain, leaving the affected like my late mother unable to walk, talk, or care for themselves. Caregivers like Mandi and my late father are true “HD warriors.” 

However, because of this, we have developed a very realistic view of life.

“We are all in a race to death, but people at risk for life-shortening diseases know that their time to the finish line is painfully fast and troubled,” I wrote in 2009 in an article titled “HD: hurtling towards death.”

At the same time, we also have a special appreciation for the “preciousness of life.”

Confronting HD makes us especially resilient. I am hopeful that the HD community will successfully meet the challenges of the coronavirus pandemic and, as in facing past challenges, become even stronger.

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.