The definitive step out of the Huntington’s closet

Today I take my most definitive step out of the terrible and lonely “Huntington’s closet”: using my real name, I have published an article about my struggle against HD in a mainstream media outlet.

Titled “Racing Against the Genetic Clock: A historian carrying the gene for Huntington’s disease hopes to galvanize increased support for brain research,” the article appears in today’s online edition of The Chronicle of Higher Education. It will also appear in the November 9 print edition.

“Scholars often shift focus over the course of a career to pursue a discovery, a new job, or a need for variety,” begins the article, which explains my exploration of the history of science as a way to expand both my advocacy and career. “For me, it was learning that I will, at some point, develop a terrifying, untreatable, fatal brain disorder.”

With great sadness, I wrote of my mother’s demise, the discovery that I had inherited the HD gene from her, and my ongoing advocacy to raise awareness and increase funding for research towards treatments.

“At 52, I have reached my mother's age of onset,” I conclude. “I cherish each moment of health. As I contemplate my intellectual legacy, I encourage others to join the race to protect our most important natural resource – our brains – and strive for a world in which science conquers disease.”

You can read the full article by clicking here.

For the public, and in my professional circles, I willingly share that that Gene Veritas is Kenneth P. Serbin. I will still write this blog as “Gene Veritas” (the “truth in my genes”), my trademark in the HD world, the persona that in many ways symbolizes the struggles of our community and, indeed, all disease-gene carriers.

Gene Veritas, aka Kenneth P. Serbin, at Alnylam Pharmaceuticals in 2011.

An arduous and painful transition

I had hid in the HD closet ever since my mother’s diagnosis in late 1995.

Many times I wanted to shout out to the world about my mom’s terrible downfall and my own potentially frightening future with the disease, but, fearful of genetic discrimination, I always kept quiet, swallowing my difficult feelings about HD.

In 2010, however, after the passage of federal health care and anti-genetic discrimination legislation, I started making public speeches about my predicament.

My gradual exit from the HD closet has proved arduous and painful.

On October 25, the day I received the news of my article’s acceptance for publication, and for a few days thereafter, I felt especially overwhelmed and apprehensive.

I thought of how tens of thousands of Chronicle subscribers will have access to my article, and many more people may read it by simply viewing it for free on the publication’s website.

Above all, I worried about how to tell my co-workers and superiors. With the Chronicle article, I will be deliberately demolishing the near-perfect firewall that I painstakingly constructed between my professional life and HD advocacy.

Some may be shocked to learn of this hidden dimension of my life, and they will likely worry about me, too.

Luckily, when I inform them about the article, I’ll also tell them that my latest checkup with my neurologist, on October 30, ended with a clean bill of health on the HD front. I’m not required to do so, but, after revealing the terrible symptoms I could suffer, I also want them to know of my success so far in remaining asymptomatic (click here to read more).

Controlling my own story

In the last few days, however, I achieved a sense of calm, and, in the final hours before the publication, even a bit of jubilation.

I’ve been able to rely on my wife, close friends, and members of the HD Facebook community for moral support.

In anticipation of the article’s appearance, I actively sought their advice about how to reveal the article to my colleagues. They’ve all helped me put this moment in perspective.

For those who advised against coming out, I’ve described the Chronicle piece as a “preemptive strike.” Rather than let others learn about my HD status by stumbling upon it on the Internet, hearing through the rumor mill, or becoming aware only when my symptoms start, I am taking the initiative to “control the narrative of my own story” about HD.

This approach provides me with the opportunity to properly educate friends and colleagues about HD and perhaps even build a support network to assist me should I become disabled.

Feeling lighter

Although this definitive step out of the closet remains a momentous event for me, I have come to see it as an opportunity to expand the Huntington’s cause and to help defeat the very stigma of HD that originally sent me fleeing into the closet.

I will also feel immense relief and joy at being able to talk openly about HD at any time and with any person.

In discussing the Chronicle piece with a close professional colleague and friend the other day, I was thankful to hear his prediction that this experience, fraught with so much doubt  about the balance between advocacy and privacy, would ultimately bring me closer to my wife.

Indeed, far too much of our energy has gone into insulating ourselves instead of reaching out for the support we need on a personal level and in terms of the cause.

I nearly cried after my friend assured me that I would feel an immense burden lifted from my shoulders.

“You’re going to feel lighter,” he said with confidence.

Amen to that!

I know the road ahead is unpredictable, and that I will feel many things besides lighter, but for now, I’m just glad I can tell people how I’m racing against the genetic clock.

( I dedicate this article to the memory of my mother Carol Serbin, who died on February 13, 2006, after a long battle against HD, and of my father Paul Serbin, the “HD warrior” who tirelessley cared for her for more than ten years and who died with a broken heart on September 25, 2009. I know my parents would have been proud of my Chronicle article.)

To strive or to chill? Seeking balance in the fight against Huntington’s disease

In late 1995, after I received the shocking news that my mother had Huntington’s disease, I decided to fight back for her by learning all that I could about this incurable disorder and also advocating for treatments and a cure.

Then, after testing positive for the HD gene in 1999, I sought to save myself by finding ways to stimulate my brain in order to stave off the inevitable neurological symptoms.

As I worked to maintain my health, my HD activism grew into a full, second career parallel to my professional work, and complicating my life as a husband and father.

Two views, two necessities

“Keep striving,” a close friend wrote recently after reading one of the articles in this blog, which, for seven years, has served as a chronicle of both my advocacy and strategies for avoiding HD and, in and of itself, has provided an escape valve for my frequent anxiety about the onset of symptoms (click here to read more).

I am living a very complex paradox. I must strive, but as I do, I also must avoid allowing my activism to exhaust me physically and emotionally.

As I wrote last year, I walk an HD tightrope that requires me to very judiciously balance all aspects of my life. One slip, and I could fall off the wire and plunge to disaster.

The past year has proved exhilarating but also psychologically trying, beginning with a major coming-out speech before world-renowned HD scientists last February and ending with wrenching articles about HD and suicide, abortion, and the deaths of two girls from juvenile HD.

“You need to chill more,” another close friend of 32 years has counseled me repeatedly throughout my journey with HD.

He recommends that I “chill” as an antidote to the striving. He recommends spending less time on work, writing, and the HD movement and more on the simple, relaxing things that I could enjoy: good food and wine, books, movies, conversation with friends, walks with the dog – or just plain doing nothing.

To strive or to chill? That’s the question I face each day.

The rhythm of life

In a memorable sermon during my college years, the pastor of St. Thomas More Chapel at Yale, Father Richard Russell, spoke of the need to “get into the rhythm of life.”

As an HD activist, I especially feel that need. When I achieve that rhythm, my existence feels like the alternating phases of the heart’s cycle – pumping and relaxing over and over again.

Over the past day, that’s exactly how I’ve approached HD and the rest of my life.

This past Saturday afternoon, my wife, our 11-year-old daughter, and I took an hour-long walk in the San Diego beach community of Pacific Beach. Couples and families like us strolled, while more adventurous people on bikes or roller skates weaved in and out. The 70-degree sun bathed us all. We dined on Greek fare at our favorite restaurant, followed by frozen yogurt.

Late at night I worked on this article. This weekend, I had consciously chosen not to write on a difficult topic. I wanted to “chill.”

While I wrote, I couldn’t forget how during the previous night I chatted on Facebook for an hour, trying to help a person recently shocked by the revelation of HD in her large, extended family.

Last night I turned off the computer without finishing the article. I read for a while before turning in.

This morning, I walked door-to-door with my daughter as she sold Girl Scout cookies in the neighborhood.

What a great feeling! Watching her take charge of the sales, I recognized how much more mature and confident she has become.

I forgot not only about HD, but all my other cares.

Now, after lunch, I sit again at the computer, contemplating how I must stay in the rhythm and find the right balance between striving and chilling.

Enjoying the ride

It’s nerve-wracking to wait and wonder when and how the individual symptoms will start, especially because, at 52, I have reached the age at which my mother had already developed symptoms.

I sometimes become impatient about the rate of progress towards treatments and a potential cure.

Sometimes my fear provokes megalomaniacal thoughts about striving against HD, as if I’m a lone knight battling a fire-breathing dragon.

Then I remind myself that I cannot singlehandedly defeat this disease.

We all must get into the rhythm together: patients, asymptomatic gene-positive individuals like me, caregivers, physicians, and researchers.

And we all need to take a break from striving in order to chill.

As one of my California HD Facebook friends likes to say: when matters get rough, “go surfing!”

I don’t surf, but the thought of the power, immensity, and majesty of the ocean brings home the point: I control only a very small part of my destiny, and I might as well enjoy my ride on earth.

An HD Thanksgiving toast

Thanksgiving is my favorite holiday.

Just when the year threatens to become frenetic, Thanksgiving intervenes with a hearty feast and family warmth.

When I was about twelve, I wrote a letter to my aunt Claralou praising her for the peaceful and welcoming atmosphere of her annual Thanksgiving celebration. She displayed my letter on her refrigerator door, and it appeared there again year after year as a remembrance of the true spirit of Thanksgiving.

My mother helped her and the other women with the turkey roasting in the oven for what seemed like forever, while my father, my uncle, and the other men drank beer, talked, and tended to us eight cousins stuffed into the house.

Nobody was a smoker, but on Thanksgiving my dad and my uncle would light up cigars and smell up the den where the football classics were playing on TV and I tried to learn how to use a nutcracker. One year they let us try a few puffs. I felt cool and manly.

Thanksgiving put the brakes on schoolwork, and, in college, when I spent the holiday on the East Coast, it saved me from completely exhausting myself.

I also like Thanksgiving because, of all the holidays, it has resisted commercialization the most. Aside from a trip to the supermarket for dinner items, the urge to buy is absent. (Black Friday is definitely not about Thanksgiving, but Christmas.)

Now in her 80s, Aunt Claralou still celebrates Thanksgiving in the same home, but, living in California with my own family, I haven’t had the chance to spend the holiday there.

My parents are gone – my mother the victim of Huntington’s disease in 2006 at the age of 68, my father, the “HD warrior,” dead at nearly 82 from a broken heart a little more than two years ago.

Ever since we learned of my mother’s diagnosis the day after Christmas in 1995, Thanksgiving has taken on a more profound meaning. For me, it really is a time to take stock of all the good in my life – even though I have lived in wait and dread of HD after testing positive in 1999.

Despite the enormous worries about our future, my family and I are thriving. My wife continues to work full-time as a teacher. Last weekend she ran her sixth half-marathon since taking up running in early 2010. Our “miracle baby,” who tested negative in the womb, is performing well in sixth grade and preparing to take the private-school entrance exam. And, as I look to my 52nd birthday in less than two months, an age at which HD had already stricken my mother, I have displayed none of the classic symptoms of HD.

Along with my wife and daughter, I have experienced the simplest yet profoundest joys of life (click here to read more). Last Saturday our daughter played her last soccer game of the season. As she played one of her best games, I doubled on the sidelines as the assistant coach and team videographer, and my wife cheered them on and made sure the half-time snacks were ready. Later in the afternoon we attended the year-end party, where I was moved by the girls’ unity and laughter and the realization that we parents were a team just as united in our devotion to our daughters.

I feel a special debt of gratitude to the many people engaged in the fight against HD: the members and administrators of the four organizations combating the disease; the HD people and their families fighting the good fight each day; the physicians and caregivers; and the scientists and pharmaceutical companies on a quest for treatments and a cure.

I am continually moved by the circle of close friends who pray for and support for me in numerous ways – especially Norman Oder, the editor of this blog and my “HD alter ego.”

I also want to thank you, my readers, for sharing with me the harrowing odyssey of living gene-positive for a condition described as “the devil of all diseases.” In posted comments, on Facebook, through e-mail, and even in phone calls, you have expressed your unflagging support for me personally and confidence in our collective fight to defeat HD.

Knowing that you are listening, challenging, and cheering me on provides me with an immense emotional strength, and hearing about your valiant efforts against HD inspires me.

As I share both a ham and turkey with our guests on Thursday, I’ll raise a toast of thanks to you.

Huntington’s disease and the financial jitters

As I’ve written before, living with the deadly gene for Huntington’s disease is like a high-wire act. Fearful that HD’s terrible symptoms could start any time, I walk the tightrope while juggling job, family, HD advocacy and, along with my wife, our finances.

As I have described in a number of articles since beginning this blog in January 2005, HD is a killer of dreams. Although the threat of HD has caused me to grow in many ways and to enjoy life more fully, it has also led us to abandon many plans, including having a second child after we went through the trauma of testing our first baby in the womb. (She tested negative and today is a healthy eleven-year-old.)

If it weren’t for the specter of HD, which took my mother’s life in 2006, I could have advanced much further in my career. My wife and I could focus on saving for retirement rather than building up an “HD war chest” to compensate for the deep losses in income expected after the onset of symptoms forces me to stop working in the near future.

I’m almost 52, the age at which my mom already had symptoms.

Turning the crisis to our favor

The fear of HD has caused us to fret about our finances. We agonize over big purchases, and even bigger decisions such as refinancing our home turn into weeks- and even months-long discussions.

Our fears increased greatly in the recession that began in late 2007 and got much worse in 2008.

Like many Americans, we were reeling from the stock market crash, which eroded our savings. We were stunned at both the enormity of the crisis and the massive stimulus program, financed with borrowing from foreign sources.

But, hopeful about a recovery, we sought to turn the short-term crisis to our long-term advantage.

In 2009, during the early months of the administration of President Barack Obama, we took advantage of extremely low interest rates to refinance the mortgage, taking out extra money to build a swimming pool and carry out other home improvements. (I jokingly referred to the project as the “Obama stimulus pool.”) The risk was well worth it: the huge savings from the lower interest rate made the pool affordable, and I took up swimming again to bolster my brain against HD onset.

Economic pain

In a state with a real unemployment rate of more than 20 percent, we were thankful to have jobs.

However, we started to feel the economic pain not long after we took our first swim in the pool. For the first time in nearly two decades as a university professor, I received no raise during the 2009-2010 academic year. The next year my wife, a teacher in the San Diego school district, took a 3.7 percent pay cut that remains in effect. Like many others facing pay freezes and cuts, we’re also paying more for benefits.

To compensate for the lost pay, the school district cut five days off the school year and cut hundreds of millions of dollars from its budget. Now, with California sinking ever deeper into crisis and forcing additional school cuts of tens of millions of dollars, the San Diego district leadership may cancel even more classes. Last week, the superintendent declared that the district might need to declare itself insolvent. Teachers will likely face further salary cuts.

As we feared yet another drop in family income, my wife and I also worried about the quality of education our daughter is receiving in the public schools. We quickly became frustrated with the middle school that she entered in September. Class sizes are large (36 per class), and the school does not offer placement tests to ensure that all students have access to the proper level of instruction. It offers only a few honors sections.

Frustrated and convinced that the school crisis will last for many years, my wife and I decided that our daughter will apply to private schools.

Extending beyond our reach?

Annual tuition and other expenses at these schools could cost as much as $30,000. To afford it, we would need to forfeit all saving for retirement – the biggest portion of our HD war chest. Because we put pre-tax dollars into retirement, every dollar we stopped saving would be taxed at about a third. That would make the real cost of the most expensive private school closer to $40,000.

That was getting well beyond our reach, especially when we also need to save for our daughter’s college expenses.

Once again, we decided to refinance our mortgage in order to borrow enough money to pay for about half the cost of six years of private school (grades 7 through 12).

Because we refinanced for the pool, this time we must max out on the mortgage: we will be borrowing about 75 percent of the value of the home. We bought the house in 1999 and saw its value more than double during the real estate boom of the early to mid-2000s. Even in today’s depressed market, it’s still worth about two thirds more than the original price, thus allowing us to take out substantial cash upon refinancing.

In addition, interest rates have dropped to near historic lows. We’ll have a rate below 4 percent – a bargain when compared to forfeiting saving for retirement and the HD war chest.

Risk exposure

Nevertheless, unlike the pool project, this round of refinancing has left me with the jitters. Taking out such a big loan, with a mortgage payment of hundreds of dollars more per month, conjures up memories of how little disposable income we had after our first property purchase in 1994. That was before we learned that my mom had HD.

The future of our economy seems even more uncertain than it did in 2009.

And I worry about exposing the family to too much financial risk precisely as I progress towards the probable onset of HD.

In fact, as I write this article, it seems like sheer lunacy!

How will we pay for private school and a bigger mortgage, save for our daughter’s college and our retirement, build the HD war chest, and run the household if I must go on state long-term disability, which would pay, at most, only 65 percent of my salary (this income, at least, would be tax-free) and run out after age 65? I might be able to supplement disability with Social Security and Medicare benefits, but, as I wrote earlier this year, HD people struggle to obtain, and are sometimes even denied, those benefits.

Helping while I can

It’s a huge gamble – but one that we feel we must take.

It only makes sense when I remember that we are providing for one of the best investments in our daughter’s future: an excellent education.

Born HD-negative, she was our “miracle baby.”

But she is no longer that baby. She stands on the verge of adolescence – and is now only five years away from filling out her college applications.

She is HD-free, but could still feel the disease's impact because of the stark possibility that I could become disabled and therefore less able to support her during her high school and college years

I desperately await news of the key research breakthrough that will save me from the dementia and other devastating symptoms of HD. I want to see my daughter graduate from college and build a life of her own.

If HD prevents me from enjoying those moments, I will at least have done my part to help her get there while I could still help.

Face to face at the Huntington's disease convention

I’ve known about Huntington’s disease ever since my mother’s diagnosis in 1995. For just about as long, I’ve been affiliated with the Huntington’s Disease Society of America (HDSA). I joined the HDSA-San Diego support group in 1996 and served on the chapter board from 1998 to 2010. Last month I visited HDSA national headquarters in New York, where I gave an informal talk to the staff about my struggles as a person who is gene-positive for the disease.

Still, work and travel commitments have prevented me from ever participating in the organization’s annual convention.

That’s about to change this coming Thursday, June 23, as I travel to Minneapolis for the 26th annual convention, held at the Sheraton Bloomington Hotel.

A record 1,000-plus registered individuals are expected to attend. I am looking forward to meeting people from other HD-affected families, brainstorming on how to strengthen our cause, and sitting in on several workshops and other activities scheduled for the June 24-25 agenda. Among others, these include explanations of the disease, caregiving issues, advocacy, and a major session on the latest research developments. (Click here for a complete list.)

It should also prove highly rewarding – and hopefully plain fun, also! – to solidify some of the many online friendships I have developed over the years through this blog and my presence on Facebook.

A pivotal year

I’m bracing myself emotionally for what should be a very poignant experience.

In June I normally visit Brazil to conduct research as a professional historian. However, for the first time in a quarter century, I am skipping my annual visit to the country that is my second home and the birthplace of my wife. (She and our HD-free ten-year-old daughter arrived in Rio de Janeiro last Saturday after we spent a short vacation together in Florida visiting the Harry Potter theme park at Universal Orlando.)

This leaves me sad and reminds me once more of how HD has stolen many of our dreams as a family.

It also symbolizes the big shift in my life as I more carefully focus my efforts to help scientists in their quest for treatments and a cure.

In that respect, this year has become pivotal. On February 7 I delivered the keynote address to some 250 scientists, physicians, pharmaceutical company representatives, and others at the 6th Annual HD Therapeutics Conference in Palm Springs, CA, on February 7. On May 17 I gave a similar presentation to about 50 scientists at Alnylam Pharmaceuticals in Cambridge, MA, and held a sample of the company’s potential drug in my hand.

At the HDSA convention on June 25 I’ll take part in the traditional candle service, where representatives of the community light candles for the various groups within the HD community. My candle will represent “the hope of people living with HD.”

For me, this will be a great moment of solidarity. I will also be thinking of my mother, who died of HD in February 2006.

I know, too, that I’ll probably see scores of HD people – each one a reminder of my future as I await the inevitable onset of symptoms that characterizes HD.

Is a convention necessary?

Echoing the critical remark I read on Facebook yesterday, some might question the wisdom of holding a convention when so many HD families are in dire need. Attending a convention is beyond their means financially and/or logistically. They need help in the HD trenches.

Indeed, last month I wrote a blog article titled “S.O.S. for Huntington’s disease families." The article discussed the loss of income and extremely burdensome caregiving costs faced by these families. The demand for assistance far exceeds what HDSA can provide with its $8 million annual budget.

HD families should always question the goals and activities of the organization. Indeed, they are the organization. Only in this manner can our organization improve.

Over the years I have attended conventions and meetings of various kinds for professional or other reasons. Conventions are only as good as the people who attend and the ideas they contribute.

I am looking forward to the HDSA convention, because, in addition to the reasons I outlined above, it will provide me with the opportunity to meet people face-to-face, to see their body language, to build trust and camaraderie, and to exchange ideas freely.

I believe that this kind of contact can reinforce teamwork and strengthen our movement. Hopefully it can also bolster our hearts and souls.

As always, I’ll have my camera, voice recorder, and camcorder in hand to capture some of the highlights of the convention, and I’ll be blogging on the results upon my return.

* * *

Speaking of conventions, it’s time to sign up for the World Congress on Huntington’s Disease, to be held in Melbourne, Australia, from September 11-14. Interested scientists and members of the HD community can obtain more information about this all-important event by clicking here.

* * *

In my last article, “The Huntington’s disease high-wire act,” I neglected to mention that a book with a similar title, On a High Wire, Without a Net! Living with Huntington’s Disease was published in 2009 by HD activist and writer Susan E. Lawrence. Susan also wrote Sheltered from the Storm: Preparing for the HD Onset. Both books are valuable resources for our community.

* * *

This is my 101st posting in this blog! I began At Risk for Huntington’s Disease in January 2005. Let us all hope that sometime within the next 100 postings we can celebrate a major breakthrough towards a treatment for HD.

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.

Huntington’s support group: seeking solidarity, fighting denial

As I live at risk for Huntington’s disease, one of the toughest things for me is to attend the local support group.

I began attending the San Diego group in January 1996, a few weeks after learning of my mother’s diagnosis for HD and the fact that I had a 50-50 chance of inheriting the disease.

At the monthly meetings, my wife and I always saw people afflicted with various stages of HD.

From those very first meetings, I remember one man, probably in his early forties, whose body moved uncontrollably the entire meeting. He was sitting in front of us, and he kept shifting in his chair and lifting it up and down, causing it to move back towards us.

He and I later had a phone conversation. He could still talk, but he spoke slowly and with a kind of quiet stammer, typical of many HD people, who ultimately lose the capacity to communicate. A computer programmer, he explained that he had to quit working after he was unable to finish an important project.

Seeing him and so many other HD people sent a paralyzing chill through my body. This, I knew, could be my future: shaking, unable to work, and dependent on my wife and others.

I always wanted to turn away from HD people, but there they were confronting me with their progressively listless expressions and struggles to maintain their humanity as their brains melted away.

I witnessed HD’s relentless attack on my own mother during visits back to my hometown outside of Cleveland, Ohio.

In San Diego, my wife and I always left support group feeling as if we had just departed from the wake of a loved one. The horrific symptoms of HD and the threat of an early death seemed to stalk us in the car as we drove home. It always took me a few days to feel normal and unthreatened by HD.

Protecting our privacy

But we kept going back. I needed to learn about HD in order to pass on caregiving advice to my father and sister back in Ohio, and I wanted to absorb every bit of information about how to prevent the disease from affecting me. I also knew that we had strength in numbers. Both my wife and I found comfort in sharing our fears with other members of the group, which frequently subdivided into smaller groups for the affected, the at-risk, and the caregivers.

We were regulars for several years. Even so, I was extremely guarded in sharing my most personal details. I decided to get tested (in June 1999) without airing the idea to my at-risk friends, and I told none of them about my gene-positive result. I did reveal that our daughter had tested negative in the womb (in January 2000), but provided no details about that process, including the fact that I had decided on testing mainly because we wanted to have a child.

I wanted to protect my privacy in order to avoid someone at work or in my profession finding about my situation, so my wife and I adopted a policy of secrecy.

Returning to my roots

At the time of our daughter’s birth in mid-2000 I was becoming ever more deeply involved as a board member for the local chapter of the Huntington’s Disease Society of America. Combined with our daughter’s arrival, that big life change left us little time for support group. My wife stopped attending in order to watch the baby. I attended monthly board meetings instead.

Last October, after twelve and a half years on the board, I decided to resign in order to devote time to other aspects of the HD movement. I also want to enjoy life and my family more before the inevitable symptoms start.

Now I have returned to my roots in the movement: the support group. In 2010, I began exiting the HD closet, and last month I decisively left it after delivering the keynote address to the “Super Bowl” of HD research in Palm Springs, California, and putting the speech online. The meeting was sponsored by the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.”

I’m looking to my fellow support group members to help me make this momentous transition in my life. And I want to support others in their travails with Huntington’s disease.

‘I am gene-positive’

I volunteered to speak before the group on February 28. The topic: “a gene-positive activist copes with the threat of HD.”

I had taken months and countless hours to prepare for my speech in Palm Springs to some 200 of the world’s leading HD researchers. I was on edge for weeks. Yet I had achieved a state of calm on the day of the event.

Not so on the day of my talk to the support group. I felt very uneasy about speaking before this much smaller and much more intimate audience of about 40 people.

“I am gene-positive for HD,” I told them very early in my talk, which repeated many of the main points of my CHDI presentation.

For the very first time, I explicitly revealed my status to the support group.

I explained how I had created the pseudonym “Gene Veritas” for this blog and was now “unmasking” Gene to reveal my real identity.

Connecting with my 'HD family'

Revealing the truth of my genes to this familiar group of people moved me profoundly. Long-time caregivers watched intently. People who had tested negative after years of fear had knowing looks on their faces. Just a few feet from me sat several people with very noticeable symptoms – but not bad enough to prevent them from attending, unlike former members of the group now in a nursing home. They understood everything I said.

These people lived in my community, and we shared so much in common in our long struggle against HD.

With great sadness, I mentioned my parents’ long fight together against Huntington’s. I recalled my mom’s death in 2006 and how my dad, the “HD warrior,” was never the same man after she died. He passed in September 2009.

Everybody understood. I felt naked as I shared my feelings and experiences, and I felt deeply connected to everybody in the room.

It was as if I were speaking to one, big extended family.

A new theme: denial

I introduced another theme that had never been so openly discussed at the support group: denial.

I pointed out that I had engaged in my own form of denial in part by keeping my gene-positive status a secret and adopting a pen name. (But I have confronted denial in this blog).

In fact, perhaps more than anything else, coming out about Huntington’s caused the discomfort I felt before, during, and after this talk. In exposing the truth to others, I could no longer hide it from myself.

The threat of HD has moved again to the forefront of my life, and for good, until an effective treatment is found.

I also spoke of the deep denial of HD in my extended family. It led my mom’s brother and his wife to tell their children that mom had “mental problems.” My sister and I no longer talk because of deep disagreements about HD and caregiving for our parents. (I told the group that she found out about HD after having her three sons and has lived the past 15 years in HD limbo, as no one in her family has been tested for the disease.)

A challenge

I told the group that the time had come for me – and for everybody else in the HD community – to take off our masks. It is time for the “faceless faces” of HD people to reveal their situation and end the stigma of Huntington’s disease, as Florida HD activist and filmmaker James Valvano has proposed in his latest project (click here to read more). (You can also find James on Facebook.)

I issued a challenge to myself and everybody in the room: we all needed to get our relatives, friends, and acquaintances involved in the HD movement.

More than ever, there is hope of an effective treatment, I told the group, summarizing some of the impressive advances reported at the CHDI meeting. Clinical trials are being planned for at least two major approaches to stopping HD at its genetic roots.

However, without involvement by the community in clinical trials, all the scientific skill and money in the world will not stop HD. The researchers need people to test their drugs for safety and efficacy.

How to combat denial

After the talk, I answered questions and posed some of my own to the group.

I wanted to know: how could we end the denial of HD in our families?

The ideas flowed. One fellow activist, who recently tested negative after years of fearing the disease, proposed that we stand with signs at high-traffic street corners telling people about HD and the need to stop it. Another participant said that we should share our experiences with denial and help one another strategize on how to combat it.

Someone else pointed out that families should ensure that “Huntington’s disease” is listed as the cause of death on their loved ones’ death certificates. Often health care workers or officials have omitted HD, further pushing the disease into the darkness.

Others pointed out that it’s important not to judge those who don’t – or won’t – join the cause. “Every HD patient is different,” said one participant.

Compassion and hope

I also wanted to know: should I try to help stop denial in my own extended family? Should I send a DVD of my CHDI speech to my sister and my uncle?

A number of people said that I definitely should, but with a cover letter explaining my situation and the disease.

Another person disagreed strongly. It was more important to seek the help of those who already showed solidarity with the cause.

Yet another said that, if someday my relatives have questions about HD, they might not seek advice from me, but from someone else in the HD community. It was important to let the relatives take the initiative.

Others expressed what might ultimately be the most important approach: to present HD as something that is not shameful, to have compassion for people like my sister, and to deliver the new message of hope made possible by the latest scientific breakthroughs.

It was time to go, but we had taken a step towards overcoming one of the biggest obstacles to the success of our cause and the discovery of effective treatments.

For me, the talk reinforced my goal of motivating people to overcome denial and join the cause.

Losing control, seeking connections

As a person who is gene-positive for Huntington’s disease, I have steadily stepped up my involvement in the cause to stop it. My commitment began a couple years after learning of my mother’s diagnosis in late 1995 and intensified after I tested positive in 1999.

Lately, as I take on ever more tasks in the movement, I should feel great satisfaction. And I do.

But, ironically, I’ve also felt that I’m losing control over my life. I feel overwhelmed by what I call my three jobs: family, work, and the HD cause. And my decision to gradually go public about my status will forever change how people see me.

Big goals

On September 24 I made my first speech in the United States about my family’s struggle against HD.

After blogging on that presentation, I delved into an overdue writing project for my work. A lot is riding on it, because, if successful, it could lift my profile in the world of writing and help me raise awareness about the need to fight HD and other genetic diseases.

I had been working on this project for six months, and when I turned it in last Thursday, October 7, I felt an enormous relief.

But I immediately had to prepare for something even more important: the next day, October 8, I would pay my annual visit to Isis Pharmaceuticals, Inc., for an update on the company’s historic attempt to stop HD.

Genetic guerrillas

My professional writing project is about former South American guerrillas accused of terrorism. Suddenly, I had to shift to thinking about oligonucleotides, or oligos, which are a bit like genetic guerrillas. If all goes as planned, these guerrillas will bind to messenger RNA in the brain cells of HD patients and block the process that kills the cells.

Known as antisense technology, the Isis approach is a rare attempt to stop HD at its genetic roots. So it might lead to a “cure,” although Dr. Frank Bennett of Isis cautions against the use of that word. The more likely outcome is a treatment that becomes one in an array of medicines.

I spent several hours reviewing my past articles on Isis, posters on oligos presented at scientific meetings, and the notes from my conversation with Dr. Doug Macdonald, the director of pharmacology at CHDI Management, Inc., informally known as the “Cure Huntington’s Disease Initiative,” a collaborator with Isis in the oligo project.

My life in their hands

At Isis I was overwhelmed to see Dr. Bennett, the senior vice president for research, and Dr. Gene Hung, the scientist in charge of the HD research project. In my imagination these two men, along with others on the Isis team, hold my life – and the lives of tens of thousands of HD patients and at-risk individuals – in their hands.

Before we even began the interview, I warmly thanked Drs. Bennett and Hung for their dedication to assisting the HD community.

I desperately wanted to hear from them that Isis had found the treatment and was ready to begin testing in humans. In a nutshell, the project is taking longer than anticipated, but the progress is remarkable. (Later I’ll blog in greater detail on what I learned.)

Driving home from Isis, I felt a strange mix of euphoria and angst. I had just received encouraging news, and I had successfully carried out an interview on a difficult and complex subject.

But there are no guarantees the project will ultimately arrive at an effective treatment.

And, I wondered, what if it comes too late? My mother died of HD in 2006 at the age of 68, and, at 50, I am already past the age at which her symptoms began.

I wanted to both celebrate and hunker down.

The grapevine

Several months ago I told a good friend and professional colleague about my situation. This was the first time I revealed HD to anybody in my field. He showed great compassion and even made a donation to the Huntington’s Disease Society of America.

Last night I got a surprise call from a mutual friend and colleague who had heard that I was facing “health issues.” He was concerned that I might have something like multiple sclerosis or prostate cancer.

The inevitable grapevine has gone into action, I thought to myself. I have known this person for well over a decade and have trusted him on many professional questions. I decided to tell him about Huntington’s disease – and about how it was important for me to keep it hidden for so many years.

HIV-positive and HD-positive

The first friend had no inkling whatsoever about HD, but the second knew a family affected by HD and had learned in great detail about its medical and social impact.

He immediately got the picture.

This man is openly gay, and so I knew that he could identify with someone who was gene-positive for a deadly disease. In fact, I had previously imagined coming out to him because of his background as a gay rights activist.

We spent a while discussing the similarities between the situations of HIV-positive and HD-positive people.

Both groups have suffered a horrible stigma, leading to problems of discrimination in the workplace and other areas of life. Success in our shared professional field depends a lot on perceptions, and the slightest hint of an inadequacy of any kind can sour a person’s plans to advance.

And the victims of both HIV and HD face a terribly agonizing waiting game of wondering when and how symptoms will develop.

The end of control?

My friend expressed unconditional support, including future advice on how to come out.

I am sure I’ll be calling on him in the coming months. As I’ve written before, our society has developed a ritual for coming out about HIV and other well-known maladies, but still lacks one for genetic diseases, especially orphan conditions such as Huntington’s.

Although my two friends have promised to protect my identity, I know that as I speak out more about HD, the grapevine effect will grow. There is no such thing as a secret once it’s been shared. I will need to prepare myself for more phone calls, e-mails, and personal questions.

The lack of control over people’s perceptions of my HD status is something that I’ll have to live with the rest of my life.

I become especially distressed when I remember how my own mother lost control of her mind and body as HD ravaged her brain. HD people lose control over their movements and basic abilities such as walking, talking, and thinking.

HD people pass control over their lives to caregivers and, as death nears, to nursing home workers. I vividly remember how my father and later healthcare personnel spoon-fed my mother. It was as if she had returned to childhood.

In the end, nobody controls his or her biological destiny: death. People with devastating diseases have an acute awareness of this fact of life.

New and better bonds

As I approach my own destiny with HD, I will need to build ever stronger ties to people.

Going public will forever eliminate control over my genetic information, but it will also connect me to a growing number of people within the HD community and beyond.

I have long feared going public, but in doing so I can find new allies like the friend who called me yesterday to offer support.

HD could leave me completely dependent on my wife and daughter, so I also need to continue strengthening my bonds with them. If and when they need to care for me, I want that transition to go as smoothly as possible. I don’t want to be a burden, but know I could become one. I want to love and care for them while I can.