Playing in the fourth quarter of life as Huntington’s disease looms

Seeing my mother succumb to Huntington’s disease at the age of 68 and living in fear of the onset of my own symptoms, I have come to appreciate the preciousness of time.

One of my closest HD confidantes and I frequently measure time in terms of the four quarters of a football game. We see most people like us, in our early fifties, as playing somewhere in the third quarter, the prime of life.

However, I’m well into the fourth quarter. I’ve already reached my mother’s age of HD onset, and I will be extremely lucky to reach 60 without a serious reduction in my brain power and the start of chorea, the shaking and trembling experienced by most HD patients. Indeed, I cannot imagine life beyond 60, a time when my only child will be in college. I’m deeply saddened that, in an era when more people than ever are working into their late seventies and even eighties, I may have to stop in just a few years.

Because HD is inevitable, I know the symptoms will start, even as I hold out hope for some scientific breakthroughs. Maybe I’ll get a “mild” case – or maybe I’ll suffer just as badly as my mom. Like hers, most cases of HD I know devastate people physically, behaviorally, and cognitively, leaving them mere shadows of themselves.

So, these days I’m throwing long passes, aiming for touchdowns.

I’m also starting to focus on putting my affairs in order to facilitate matters for myself, as well as my wife and daughter, if HD becomes so bad that I can no longer work or take care of myself.

It’s time to prioritize. That includes stepping back a bit from this blog. Regular readers will notice that recently I’ve written much less. After a period of intense writing, I need to replenish my emotional energy.

And, in perhaps the most important process of all, I’m learning to accept my defeats, the disease, and, ultimately, my mortality.

Throwing long in the publishing world

As an activist for the Huntington’s Disease Society of America (HDSA), I’ve strived to help build awareness, although my need to remain anonymous and avoid genetic discrimination has, until recently, stymied that goal in terms of reaching out personally to people.

In mid-2010 I started to exit the terrible and lonely “HD closet” by making speeches about my family’s struggles with HD. Since then, I’ve made some ten presentations, most recently at the HDSA annual convention.

As a writer, I decided to attempt some long passes in the hope of generating greater media exposure about HD and the need to research and treat neurological disorders.

This is my moment.

Towards my goal, I’m working to publish a book about my family’s experiences with Huntington’s and scientists’ and drug firms’ quest for effective treatments. I hope to add to the excellent writings of other HD authors, including Jim Calhoun, Trish Dainton, Susan Lawrence, Carmen Leal-Pock, Sandy Sulaiman, and Alice Wexler.

How to ‘sell disease’

In today’s world, publishing a book on HD is an especially daunting challenge. With the rapid decline of traditional bookstores and the rise of the e-book, publishing is undergoing a revolution. It’s also become a virtual monopoly of an elite of blockbuster authors.

One clear message is that “disease doesn’t sell.”

Furthermore, so-called orphan diseases such as HD – with an estimated 30,000 affected people and some 250,000 at-risk – are orphans not only for the drug industry, but for the media.

Despite the terrible drama of conditions such as HD, in this information-saturated age it’s hard for people to grasp a disease that doesn’t directly affect them or loved ones.

However, in June came the encouraging news that former Palm Beach Post reporter SusanSpencer-Wendel signed a book contract for $2.3 million to chronicle how she will fulfill her “bucket list” of desires as she struggles against Lou Gehrig’s disease – a condition with approximately the same number as affected individuals as HD. She also received a seven-figure movie deal.

Indeed, disease can sell – if one has good media connections like Spencer-Wendel and discovers a way to link a story to trendy themes.

As a gene-positive HD person and HD activist, I believe disease should sell. The imminent tsunami of people affected by neurological disorders will add enormous stress on caregiving communities and the healthcare system.

Not in my wildest imagination have I thought a publisher would pay millions for a book about HD, but I do hope that, by earning at least a modest fraction of that, I could help insulate my family from financial crisis in the event of my illness and make a substantial donation to HDSA.

Focusing on the basics

As I’ve reflected on my goals, I’ve also come to recognize the danger of my ego taking my focus away from what matters most.

“Vanity of vanities!” the biblical Book of Ecclesiastes tells us. “All is vanity.”

I will continue to write about HD and strive to publish a book. However, as I head deep into the fourth quarter, other goals take on increased importance.

“Forget about the glamor,” I told myself. “Get to the basics.”

Later I quipped to myself: “God doesn’t read resumes!”

For 10 days in June, I got away from the worries of writing, career, and Huntington’s disease by traveling with my family to restful spots in northern California.

After visiting the La Brea Tar Pits in Los Angeles, we spent several days hiking in Yosemite National Park. We traversed the expansive and hot Central Valley, drove down the Avenue of the Giants in one of the state’s virgin redwood forests, strolled along the idyllic shoreline of Crescent City, took in the wild coast of Mendocino County, and celebrated our HD-free daughter’s twelfth birthday in San Francisco.

Enjoying these natural and human treasures together gave us a deeper appreciation of our home state. It also strengthened our family bonds and deepened my commitment to my daughter as she prepares to embark on a new adventure at a private school just as she enters adolescence.

At Glacier Point in Yosemite National Park

On the dock at Crescent City

Confronting the hard reality

In the HD movement we all need to strive for the big successes – such as big fundraisers, media attention, advocacy for stem-cellresearch, improved Social Security legislation, and other pressing needs.

But, as our community knows so tragically, both individuals and families need to prepare for the hard, scary reality of HD.

Instead of writing, this summer I’ve focused on dealing with the inevitable onset of symptoms – and my eventual death.

Already in January, as I prepared for the potential fallout of going more public through my writing, I had participated in an HDSA webinar on genetic discrimination. On July 11, I took part in another webinar titled “preparing for the unknown,” which discussed the importance of establishing end-of-life directives for caregivers and loved ones. On August 8, after my annual appointment for cognitive testing at the HDSA Center of Excellence for Family Services and Research, I picked up a copy of a sample advanced directive.

This summer I also reviewed the slides from a March webinar on “workplace accommodations for HD” – an especially crucial topic for me because I plan to continue as long as possible in my position as a university professor.

Receiving this information has helped me start to prepare mentally, emotionally, and logistically for the onset of HD

Putting things in order

In recent months I’ve fantasized a lot about retirement – from both my career and the HD movement.

“Our culture thinks it’s cool to be exhausted,” I wrote recently in my notes about this fantasy. “We wear it as some kind of badge of honor. I myself have been like this. But it’s absolutely nuts! I need to pace myself, keep getting down time. It’s so true what I’ve heard in Brazil: Americans live to work, Brazilians work to live.”

In particular, this summer I’ve also felt a powerful urge to put my life in order, especially those areas I’ve long neglected because of time spent on HD activism. In the fourth quarter, it’s time to take stock of my life – and to enjoy doing so.

I began by transferring the songs from several hundred music CDs onto iTunes. Listening to many of these songs for the first time in decades brought a flow of good memories from my twenties and thirties.

Next, I reorganized my home office for the first time since we moved to this home in September 1999. I threw away garbage bags laden with hundreds of old 3.5-inch diskettes, checks and check registers going back to the early 1990s, and numerous other unneeded items.

I like the idea of traveling lighter on my journey with HD and through life.

I finally caught up on our home movie collection, started scanning old family photos that are beginning to fade, and filed work and HD-related CDs and DVDs in a storage case I had bought about four years ago.

I like caring for plants. I potted three new ones and placed them by the window. It felt great to get my hands dirty and to smell the soil. Sunday evening is watering time.

What causes this desire for order? The natural rhythm of life? A side effect of HD’s subtle psychiatric symptoms, which can include obsessive-compulsive behavior? Just plain fear of onset?

Whatever the cause, the greater sense of order has brought me a sense of comfort, of preparedness for HD and whatever else life might bring, of living the moment.

Shifting passions, accepting fate

I’m in a fight for my life against HD. Ironically, that means that perhaps it’s time to stop fighting so hard. Fighting too hard can worsen stress. A positive family life, exercise, tranquility – these are the real keys to personal survival.

I have a stable job, a loving family – and the tremendous gift of so far having avoided HD’s classic symptoms.

Tranquility and stability will help me negotiate the dramatic shift in my professional career from an emphasis on Latin American history to the history of science and the chronicling of the HD movement.

In one of my recent dreams, I plunged down a Rio de Janeiro hillside on the back of a wheelchair driven by a disabled man – undoubtedly an HD man – who, like my mother, could not speak.

I used to value traveling to Brazil. Savoring those experiences brings a warm glow to my heart. As a professor and father, I pass on those experiences to the next generation.

Now I’m becoming excited about new kinds of travel: through the biotechnological revolution, through my own mind in search of its meaning.

Yet, despite the vast progress in brain research of recent decades, the drug industry still has not produced a single remedy for neurological disorders. Although I never abandon hope, I also understand that a treatment may not arrive in time to save me.

Ultimately, tranquility and stability will help me prepare spiritually for the onset of HD: the realization that, in the end, I must accept my fate.

Yale’s partnership against Huntington’s disease: an alumnus reconnects and finds hope as scientists pursue ‘Viagra for the brain’ and other solutions

The revelation in 1995 that I was at risk for Huntington’s disease, followed by my positive genetic test for HD in 1999, thrust me into a role as an activist, a journey to understand the biotechnological frontier, and a fight for my life.

However, for many years, and even after “coming out” in a major speech to scientists in February 2011, HD has remained my radioactive semi-secret because of the stigma surrounding the disease and my fear of genetic discrimination.

In those early years of confronting HD, I needed to open up to someone – and to seek help for the cause. Beyond some branches of my family and my local HD support group, I turned to the people I trusted most: fellow Yale University alumni, some close friends, others within a circle of trust. Many lent a sympathetic ear, offering donations, contacts, and advice.

Above all, they helped me feel less lonely inside the terrible “Huntington’s closet.”

Dr. Martha Nance, a neurologist in Minneapolis dedicated to finding treatments for HD, became one of my closest HD confidantes. Brooklyn-based journalist Norman Oder suggested the idea for this blog. Editing nearly every article, Oder has become more than a friend: he is my Huntington’s alter ego.

Dr. Martha Nance and Gene Veritas in San Diego, 2007.

Yale’s seal, which includes the Latin phrase “Lux et Veritas” (light and truth), echoed in my choice of an HD pseudonym, “Gene Veritas,” the “truth in my genes.”

Now, in a way I would never have imagined, I have come to rely on Yale itself in my fight against HD.

At the CHDI Foundation’s Seventh Annual HD Therapeutics Conference, held February 27-March 1 at the Parker Palm Springs in Palm Springs, CA (a hotel owned by fellow alum and real estate developer Adam Glick), I heard exciting news about how scientists in the Yale School of Medicine will help prepare the way for clinical trials of potential therapies.

(Backed by a group of anonymous donors, the non-profit CHDI once stood for “cure Huntington’s disease initiative” but today simply represents the name of the foundation, which focuses exclusively on the search for HD treatments.)

In my unrelenting drive to translate HD science into understandable terms, I dubbed these compounds “Viagra for the brain,” a phrase that refers not to the salacious aspects of the famous drug but to these compounds’ biochemical similarity to Viagra.

I also decided to visit the scientists’ labs to deepen my understanding of their crucial work, to offer my assistance, and to give myself a shot of much-needed hope.

Below, watch my short introductory video of the visit.




An emotional return to New Haven

I had returned only twice to Yale – in 1983, a year after graduation, and, during a memorable cross-country trip with my wife and daughter in 2010 in my effort to enjoy life to the fullest before the inevitable symptoms of HD set in.

This time I arrived in New Haven on May 28 after a two-hour train ride from Manhattan.

That evening, walking through the Yale campus almost 30 years to the day after I graduated, I experienced a flood of memories – some painful, some hilarious, and many, many warm and wonderful.

I remembered the sacrifices my grandparents and parents had made to help me to attend one of the world’s top institutions of learning. I recalled how, as the grandson of immigrant grandfathers and the son of working-class parents, I strived to reach the top academically and then professionally.

As I peered into the darkened windows of the Yale Daily News, where I served as a reporter, I wondered whether my 12-year-old daughter, who writes well and recently sent letters to 35 U.S. Senators about my plight and the need to reverse their opposition to health care reform, might herself someday become a journalist. I imagined the two of us critiquing news articles together. She’s finishing up sixth grade this month, and she says she wants to attend Yale. I imagined her striding confidently through the offices.

It seemed almost yesterday when I walked to classes and debated and laughed with friends in the dining halls of the university’s grand gothic buildings. Once imposing, they no longer felt intimidating. Life is fast, I thought with a tinge of sadness.

My life was abruptly sidetracked by HD. My mother died in 2006, and my father, with a broken heart, followed her in 2009. I wondered: will HD prevent me from helping my daughter apply for college and begin her own path in life?

Yale has generated many of America’s leaders, and it inspires leadership in various ways. I pondered how I had to rise, along with many others, to an unexpected leadership role in the fight against the disease. And I reminded myself that I must do my part to keep the flame of leadership burning, within myself, for as long as I can; within my family; and within the HD movement.

Back in my hotel room later that evening, I prepared for the next day’s emotionally charged meetings at the School of Medicine. It was a place I didn’t go to as an undergraduate, I thought, and represented a new phase in my HD activism, in my relationship with Yale, and in my life. These scientists could help save me.

Catching the disease early

As part of a global effort to eradicate HD, the Yale scientists will play an important role in investigating some of the disorder’s mysteries and in seeking effective treatments. The university’s faculty in neuroscience, neuropharmacology, and other fields provide a supportive context for this work.

Two of the scientists, Hoby Hetherington, Ph.D., and Doug Rothman, Ph.D., are starting groundbreaking work on important facets of HD.

Dr. Hetherington will apply his knowledge of epilepsy, brain trauma, and brain scans to study an energy deficit in HD resulting from insufficient adenosine triphosphate, the basic fuel for our cells.

Using Yale’s 7 Tesla MRI scanner, one of only a few dozen in the world with ultra-powerful magnets, Dr. Hetherington will scan humans using a method called MRSI (magnetic resonance spectroscopic imaging).

Dr. Hetherington hopes to determine whether the energy deficit in HD is a cause or an effect and, in the process, to produce a clearer picture of the disease as it actually occurs.

MRSI involves the MRI machine augmented with two pieces of additional equipment – a head detector and shim insert – permitting him to track the energy deficit by obtaining clear, high-resolution images of study participants’ brains.

As Dr. Hetherington explained, the detector allows him to adjust the readouts of each scanned individual’s brain by accounting for distortions in the magnetic field caused by the presence of the head. It also accounts for the heat generated by the head. Using the detector, he can contour the magnetic field and also pick specific regions of the brain to excite.

Dr. Hetherington’s lab designed and built the first generation of the detector and continues to develop and test new versions of the device. The detector is now in commercial development for more widespread use.

Dr. Hetherington will use the detector in his planned study of gene-positive, asymptomatic HD people like me.

Dr. Hoby Hetherington places a special head detector in the 7 Tesla MRI scanner in his lab at Yale University (photo by Gene Veritas).

Dr. Hetherington explains the innards of the head detector (photo by Gene Veritas).

To compensate in yet another way for distortions in the scanner’s magnetic field, Dr. Hetherington employs the shim insert, which he also helped to design. Like a common shim used to straighten objects in woodwork or masonry, the shim insert levels out the scanner’s magnetic field. He uses the shim to do the opposite of what the head of the scanned individual does to the field. This makes the field uniform and thus easier to read.

A standard scanner shim typically can do eight adjustments, Dr. Hetherington explained. Yale’s can do about 30.

This shim will play an important part in Dr. Hetherington’s HD scans, in which he will examine areas of the brain (such as the basal ganglia) where distortions are created by the presence of the sinuses and the ear canals.

Dr. Hetherington and the shim insert (photo by Gene Veritas)

Dr. Hetherington explains an actual anatomical image of the brain obtained from the 7 Tesla scanner (photo by Gene Veritas).

“It’s catching the pathology before it’s become lethal or progressed,” Dr. Hetherington said of his lab’s technology during my visit while showing me images from an epilepsy study. “That’s the idea of trying to have an early marker of what’s going on. If the cells have died already, the structure gets small. You can see that on standard anatomical imaging, but that’s kind of too late.”

Boosting creatine

Looking ahead 50 to 100 years, Dr. Hetherington speculated that patients with brain-based disorders such as HD and epilepsy may take a common drug to correct the problems they cause in bioenergetics.

Dr. Hetherington explained that the HD study will seek to measure phosphocreatine levels in the brain. Brain cells produce phosphocreatine, which is essential in bioenergetics, from creatine, which is also created by the body and can be taken in the form of a supplement.

Beginning with my participation in the Huntington’s Disease Drug Works (HDDW) program, I have taken creatine for nearly a decade in an effort to stave off symptoms. Creatine is currently under study in an HD clinical trial. (Click here to read more about HDDW founder Dr. LaVonne Goodman's latest assessment of creatine and other supplements.)

“If you can boost the whole pool (of creatine), you’ll have more phosphocreatine around,” Dr. Hetherington said of the theory behind creatine supplementation.

Paralleling mice and humans

Supported by CHDI, Dr. Doug Rothman, Ph.D. a pioneer in the use of magnetic resonance spectroscopy (MRS) and the Director of Magnetic Resonance at Yale, will employ MRS to examine another kind of energy deficits in the mitochondria, the powerhouses of the cell, in transgenic mice.

HD patients often need a higher-than-average caloric intake.

Rothman’s work could provide important clues as to how Huntington’s kills brain cells – and what treatments might stop it. He hopes to extend the experiment to humans, beginning with a 4 Tesla scanner and perhaps later using the 7 Tesla scanner and its accessories.

“It’s really important to keep an eye on what are the relevant aspects of a mouse model,” Dr. Rothman commented, noting that transgenic animals can manifest symptoms differently than humans, and that the mitochondria are more evolved in humans than in mice. “The only way to do that is to really explore, hopefully in parallel, what’s happening with human subjects.”

Dr. Rothman at work in his office (photo by Gene Veritas)

Alleviating symptoms, strengthening the brain

Also with support from CHDI, two other Yale research groups will assess compounds that, if successful, would improve memory and cognition, arrest some of the psychiatric symptoms, and act as neurotrophins, so-called “fertilizers” for the brain. At least one of these neurotrophins (BDNF, brain-derived neurotrophic factor) is severely deficient in HD.

As noted above, I dubbed these substances, developed by Viagra producer Pfizer, “Viagra for the brain” because the substances belong to the same class of drug as Viagra, an inhibitor of an enzyme known as a phosphodiesterase (PDE).

Although targeting different PDE families than the PDE-5 targeted by Viagra, the biochemistry is very similar. Essentially, the new compounds are cousins of Viagra, aiming to inhibit other PDEs.

The Yale scientists will test these compounds in collaboration with CHDI’s “drug hunters” and Pfizer. One coordinator of the three-way partnership is Ladislav Mrzljak, M.D., Ph.D., CHDI’s director of neuropharmacology and a former postdoctoral fellow in Yale’s Department of Neurobiology.

Scientists hope that inhibition of PDEs will compensate for some of the changes occurring in HD.

With new research showing that some PDE inhibitors reverse symptoms in mice, CHDI and Pfizer recently began collaborating with the ultimate goal of taking them into clinical trials.

“There are currently no PDE inhibitors marketed for central nervous system diseases,” Christopher Schmidt, Ph.D., a senior director at Pfizer, explained. “This is new territory.”

Mihaly Hajos, Pharm.D., Ph.D., a former Pfizer scientist and neurophysiologist with a background studying schizophrenia and Alzheimer’s disease, aims to detect whether the same inefficient use of the brain’s information processing (a so-called “auditory gating deficit”) that occurs in humans with HD also occurs in mice and rats genetically engineered to have the disease. If so, Hajos will then test PDE inhibitors as a remedy.

The experiment also could validate the electrical signals as a good biomarker, or measure, of the inhibitors’ impact on people.

Dr. Mihaly Hajos (center) with assistants Elizabeth Arnold and Dr. David Nagy (photo by Gene Veritas)

Studying nonhuman primates

Another project involves the husband-wife team of Graham Williams, D.Phil., and Stacy Castner, Ph.D., neuroscientists in the Department of Psychiatry who are specialists on schizophrenia and substances known as “cognitive enhancers.” The duo will test the effects of PDE inhibitors on cognition in normal, healthy nonhuman primates. These subjects contrast sharply with the transgenic, diseased mice, rats, flies, and even sheep and pigs used in other Huntington’s research.

“We can’t be dependent on the genetic model,” Dr. Williams explained, emphasizing the need to view the disease and the effect of potential drugs from various perspectives.

If the inhibitors work, Drs. Williams and Castner will submit the animals to harmless brain scans using FDG-PET to localize areas of the brain affected. These measurements could help predict the impact of the inhibitors in humans.

Successful studies in the nonhuman primates could help to accelerate the process of getting the inhibitors into human trials and ultimately approved as drugs, a process that could take five to ten years.

The PDE inhibitor projects seek ways to intervene early in the disease, before disabling symptoms occur. The potential therapies could help prolong my life and the lives of tens of thousands of gene-positive and symptomatic individuals.

A key workshop: from animals to humans

On May 31 and June 1, I observed yet another aspect of Drs. Williams and Castner’s research by participating with them in a CHDI meeting in Manhattan titled “Translatability of Cognitive Readouts Workshop.” With some two dozen participants and organized by Dr. Allan Tobin, one of CHDI’s two chief scientific advisors, the workshop aimed to help CHDI move from testing of potential treatments in animals to human clinical trials.

Dr. Mrzljak also took part, as did Dr. Ethan Signer, CHDI’s other chief scientific advisor, Dr. David Howland, director of in vivo biology, and Dr. Beth Borowsky, director of translational medicine. Robi Blumenstein, the president of CHDI’s sister management firm, kicked off the meeting.

CHDI will release the conclusions of the workshop in the near future. Watch my short interview about the meeting with Dr. Tobin in the video below.



The workshop was quite intense and intimate, to say the least. Sitting at a table with one another for eight hours on two consecutive days, and sharing dinner and drinks in lower Manhattan the evening of May 31, we formed new friendships and professional relationships. Dr. Tobin purposely plans the workshops in this way to extract the maximum of candor and new ideas.

I was invited to the meeting as an “observer.” I thought I would quietly sit in the back and take notes.

However, to my surprise, Dr. Tobin seated me at one of the heads of the workshop table. Just before the event began at 9 a.m. on May 31, he asked if I would mind sharing my story with the scientists, and to be “interviewed” by Dr. Julie Stout, an American HD researcher based in Australia.

A number of the invitees, such as Drs. Williams and Castner, had devoted their careers to non-HD conditions and questions, so for many in the room I was a first contact with a person from an HD-affected family.

What I expected to be a few minutes of introduction to the disease turned into a 90-minute discussion about the many social ramifications of the disease. In an effort to contribute to the questions of translatability and cognition, I described such symptoms as my mother’s depression, her loss of the ability to work, her inability to interact with her granddaughter and other family members, and the ways in which our family and her physicians attempted to deal with her symptoms. I also spoke about the fear surrounding genetic testing.

Dr. Stout commented that telling my story helped the scientists understand what it’s like to live with HD. Scientists, she observed, need the collaboration of those confronting HD in the quest for solutions.

At the end of the workshop, I thanked Dr. Tobin, CHDI, and the scientists for allowing me to share my story – which, I pointed out, was just one of thousands of such stories one could hear from the HD community.

CHDI translatability workshop participants, with Gene Veritas standing in back of room (photo by Jerry Turner, CHDI)

Yale and the big picture

Together with CHDI and Pfizer, Yale scientists will furnish pieces of a very large and complex Huntington’s puzzle currently under study by researchers throughout the world in academic labs, pharmaceutical companies, and medical clinics. CHDI, as well as governments and other organizations, supports many of  those projects in producing what most scientists project as an “HD cocktail” of therapies for managing the disease and allowing those affected to lead normal and productive lives. (Scientists don’t speak of “curing” HD, because of its immense complexity and the fact that the defective gene cannot be removed from the body.)

The path, however, isn’t simple. At Yale, Drs. Hetherington and Rothman voiced concern about the potential lack of volunteers for their research involving brain scans. Indeed, stigma and other factors threaten to leave scientists with too few research participants in which to adequately test drugs for safety and efficacy. Tragically, the drive to halt Huntington’s could stall. I pledged to help spread the word of the scanning studies in the Huntington’s community.

In the quest for treatments, scientists and patients depend on each other. Likewise, the many disease communities share a mutual goal. By helping to solve Huntington’s, Yale’s scientists will also assist those fighting Alzheimer’s, Parkinson’s, and many other conditions that afflict millions – as well as the estimated tens of millions of victims of thousands of other genetic and orphan conditions, the focus of Yale’s new Center for the Study of Mendelian Disorders.

Yale, its alumni, and its scientists have lent an enormous hand in my family’s fight. I have already gained strength and support from a network of Yale ties. Someday I may take a Huntington’s drug tested in a Yale lab.

The place that ignited my intellectual passion and launched me into life once again holds one of the keys to my future. This is the American university at its best – engaging in cutting-edge drug discovery, aiding a community long beleaguered by stigma and hopelessness, and affirming life.

The quandary of denial in the Huntington’s disease community (Part I)

The natural human tendency toward denial presents one of the biggest obstacles to strengthening the Huntington’s disease movement, including the recruitment of individuals for the observational studies and clinical trials crucial for developing effective treatments and a cure.

How do we more proactive members of the HD community influence those living in denial? How do we convince them that they need to inform themselves about HD and join the effort to defeat it?

I have wrestled with these important questions, as well as my own multiple forms of denial, ever since learning in late 1995 that my mother had HD and that I had a 50-50 chance of inheriting the condition. My denial, and feelings about others’ denial, became dreadfully more complex after I tested positive for HD in 1999.

I remained deeply in the “HD closet” for many years because of the fear of genetic discrimination, but became vocal via this pseudonymous blog. In mid-2010, I began to speak publicly about my condition.

A year ago, I “unmasked Gene Veritas” and revealed my story to some 250 prominent scientists and other observers at the Sixth Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.” I made other presentations at my local support group, an HDSA chapter convention, a pharmaceutical company aiming for a revolutionary clinical trial, and a symposium on clinical trials.

Now I want to tackle the problem of denial head-on.

Yes, we rely on denial to face the daily fear of HD symptoms, as well as the stigma accompanying the condition, but we ultimately must overcome it if we are to win the battle against HD.

And, yes, each family situation differs. In some cases, it may be easier than others. But by looking at my own family as an example, I aim to analyze some of the causes of denial, how it plays out in HD families, and how it maintains its insidious grip.

A powerful firewall

Denial often shadows my family life.

Despite my dramatic exit from the HD closet, I continue to maintain a firewall between, on the one hand, my HD activism and, on the other, the workplace and my neighborhood.

I would like to break down the neighborhood barrier, but my wife, who has lovingly stood by me through the entire trauma of the HD experience, has resisted the idea of expanding my advocacy beyond the HD community

After being named the 2011 Person of the Year of the Huntington’s Disease Society of America (HDSA) last June (click here to read more), I wanted to solicit an article in the community newspaper as a way to build awareness and support for HDSA locally. I hoped the prestige could help take my advocacy to a new level.

My wife said no. “I don’t want this in our house,” she stated adamantly, referring to HD and all of its implications, including the impact such a newspaper article might have on our daughter, now in her first year of middle school.

My daughter knows that I am gene-positive and that she tested negative in the womb, and she even has read some of my blog articles. However, my wife does not want to see her constantly exposed to HD, and she wants her to enjoy her final moments of childhood without having to worry about my health and the future impact on the family of HD when my inevitable symptoms begin.

I respected my wife’s wishes – I know she will shoulder the burdens of HD in the long run – but I was deeply frustrated. “This is such a HUGE accomplishment in my life,” I wrote in my blog notes at the time. “The greatest recognition I have received to this point – one that is about changing the world. And I can’t celebrate it!! Because of the stigma. I need to talk more, get HD out there more.”

My wife initially didn’t want to display my HDSA award plaque in our hallway of family photos, but she later changed her mind.

A bittersweet award

I wrote in my notes:

I will show plaque to [my daughter]. Families that deal with [HD] naturally and up front are the ones that have the best outcome in the long run. Denial necessary in life, but when carried to extremes, or used as the main way of dealing with life…. It becomes harmful/pernicious.

Nothing is ever simple with HD! This just can’t be a great award. [Instead] it’s got to be a reminder of my situation – and of our entire community’s situation.

Ends up being bittersweet.

If it were any other award, we’d be celebrating. No celebration. No mention. No discussion.

I hate denial!

‘Mental problems’

The HD community is filled with sad stories about denial among family members. People from HD families viscerally bond regarding the feelings of frustration, hurt, and anger over relatives’ denial.

My mother’s brother and his wife hid Huntington’s from their two children and their spouses. They explained away my mother’s behavior as “mental problems” (click here to read more). Only in the days before my mother died – six years ago this month – did my aunt tell my cousins the real cause. My cousins weren’t close to my family, but at the wake they were still so shocked by the news of HD that they cried much more than my sister, my father, and I.

Over the years I nudged my uncle, a successful small businessman and active in his community, to join the cause against HD. Many years ago, before my mother’s death, I wrote him a long and heartfelt letter outlining ways to help.

I never got a response.

To this day, I don’t know if he ever tested for HD. In his mid-70s, he has apparently showed no symptoms. Out of sight, out of mind, perhaps.

Jealousy over testing

For more than a decade, I have clashed with my sister and her family over their own denial, lack of involvement with my parents, and refusal to join the cause (click here to read more).

My sister, who to my knowledge remains untested, had her three sons before we learned of HD. Although we have never discussed it, she has undoubtedly agonized about whether she inherited the gene and, worst of all, passed it on.

She became extremely jealous of my wife and me for two big reasons: we had a daughter, and our child had tested negative.

Around that time, in 2001, my sister started to cut herself and her family off from me and my family.

Isolation

I tried to keep in contact, but she showed little interest in learning more about HD. While I have long taken doctor-approved supplements and lived with the hope that treatments could save me from developing symptoms, from what I can tell, she has chosen not to learn about such potential solutions.

As my mother declined, although I lived thousands of miles away in California, I strived to find a good care regimen for her and to assist my father with suggestions and gentle exhortations. My sister, who lived only a couple miles away in Ohio, would visit my parents but took very little initiative to improve their situation.

She became angry and resentful about my offers of assistance and suggestions. I grew increasingly frustrated with the lack of communication with the family member geographically and personally closest to my parents.

In the midst of our family’s increasing difficulties with my mother’s condition, my sister told me on the phone, “You’re not really a brother.”

I was stunned, perplexed, and offended. I had traveled regularly to my hometown to visit not just my parents, but my sister, her husband, and my three nephews. My wife and I had also offered to fly out my oldest nephew to San Diego and take him to Disneyland, Sea World, the San Diego Zoo, and other California attractions, but my sister never responded.

Failed communication

In 2005, after several years without speaking, I insisted that we reestablish communication to help my father admit my mother to a nursing home. We became close again during the final months of our mother’s life and, when she died, my sister planned the wake and funeral so that my wife, daughter, and I could fly out in time.

However, as my father rapidly declined in the wake of my mother’s death, my sister and I again disagreed about a plan of care for him. When dialogue became impossible, I asked my father’s attorney to serve as an intermediary and to assist her with his affairs, including the transition to a memory care unit in an assisted living facility.

My father died in September 2009. I learned of his death in an e-mail from the lawyer after I participated in an intense, day-long HD observational study. However, my sister did not delay the funeral, making it practically impossible to get to Ohio on time. (Click here to read more.)

I was so distraught about the situation that I also concluded I might suffer a heart attack if I attempted to attend the funeral. I organized a private memorial service for my father at our San Diego home.

I have not spoken to my sister since August 2008. In 2010 we both attended a memorial luncheon for a deceased aunt, but we did not speak or even acknowledge each other’s presence. I was still livid about her lack of compassion in failing to delay my father’s funeral so that I might participate.

Keeping a distance

At this point, the anger and resentment are so deep that I believe my sister and I may never speak again.

While I have fought to combat HD, my sister has preferred to ignore it. That has compounded the kind of intense family disagreements that sometimes accompany inevitable life-and-death issues.

After so many failed attempts at establishing a relationship with my sister, I have concluded that, because of denial and other reasons, she and her family simply have no interest in me and my family. I concluded that it would be foolish to insist.

I am a firm believer in love as a solution to many of the world’s problems, including personal hatred and misunderstanding.

In my interpretation, love means keeping one’s distance from people who don’t want a relationship.

Advocacy in my home state

On May 14, I’m tentatively scheduled to speak on my experience with HD at an HDSA event in Northeast Ohio, where I grew up and where my parents are buried side by side.

Returning to my home state to speak out as an HDSA advocate will surely stir powerful and difficult emotions.

Many questions are running through my head. Should I invite my uncle and my sister – and their families – to attend? Would they even show up after so many years of conflict and denial? Would we talk and, if so, what would we say? Part of me doesn’t want them to attend, because I fear my anger at them might diminish the effectiveness of my activism.

Frankly, I don’t think they want to hear what I have to say, especially because I advocate activism. Years ago, my sister used to read at least some of my blog, but now I have no idea whether she follows it. I doubt my uncle even knows I have a blog. Should I continue to chalk them up as a lost cause? Or, in the name of the movement, should I make the extra effort to bring them into the cause?

As an advocate, I feel obliged to reach out. However, as a member of an HD family, I feel forlorn about the prospects for action by people such as my uncle and sister.

How to untie this knot?

I am reaping the fruits of my family’s long denial of HD.

The great irony is that my sister, my uncle, and their families probably don’t even know that I was named the HDSA Person of the Year.

The easy solution is to do nothing about the May event. Despite my award and my long years in the HD trenches, I feel powerless to change them.

My fellow HD activists, family members, and friends, what would you do?

How do we untie this terribly complex knot of denial?

I am in quandary about how to act – and to overcome this problem that threatens our march to treatments and a cure.

Continuing to speak out

Denial is like an added curse on HD families already so overwhelmed with the disease’s medical burdens.

My family’s story pales in comparison to other examples of denial and insensitivity.

As I reflect on these stories, I’m struck by the immensity of the stigma surrounding HD.

Perhaps I can take comfort in the fact that, no matter what my uncle or sister or anybody else thinks, I will speak out again about HD on May 14. In the final analysis, that is all I can do.

Someone will be listening, and that is good.

(Next: further reflections and concrete suggestions for overcoming denial.)

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.

The Huntington's disease high-wire act

As a carrier of the gene for a deadly brain disease, I fight back with the instinctual urge for survival.

I dread the threat of that incurable killer – Huntington’s disease – as I recall my mother’s own struggle against it. For some 15 years, as I watched her lose the ability to walk, talk, and think, I looked into a genetic mirror that foretold my own future.

In the months before and especially after her passing in February 2006, I grappled with the fear of death. For the first time in my life, I knew I would die, and that death would come only after a decade or more of suffering. I am reminded of that harrowing reality each time I see an HD person or communicate with HD-affected families.

I also nurture hope that scientists will discover an effective treatment – perhaps even a cure – and therefore make my gene-positive status at best irrelevant and at worst a manageable, chronic condition, like diabetes. In the meantime, I watch my health and take supplements recommended by the Huntington’s Disease Drug Works program, try to squeeze in as much life as possible before my inevitable symptoms begin, and immerse myself ever more in my “shadow career” as a Huntington’s disease advocate.

In this race against time, I oscillate between dread and hope while struggling to balance the many facets of my life: profession, family, health, faith, and activism.

Tough decisions

“So many tough decision and choices,” wrote a good friend after reading about my shadow career. “You are like a tightrope walker, like the ‘Man on a Wire.’ Did you ever see that wonderful film? I recommend it – because living with a positive gene test as you are, balancing so many things, is a bit like what he does.

“And like him, you are an artist with a beautiful, amazing sense of living in the moment even while looking ahead.”

I was long intrigued by the theme of Man on Wire but hesitated to watch it, perhaps fearing that it would indeed remind me too much of living gene-positive for HD. Last Sunday, June 5, I finally watched it.

In walking on a wire between the World Trade Center’s Twin Towers in 1974, French aerialist Philippe Petit demonstrated how he lived out his ultimate fantasy joyfully – but also precariously, tempting mortality.

I know many people in the HD community performing their own, tragic tightrope acts – like the young adults pondering whether to test, couples debating the genetic risks of pregnancy, and caregivers weighing the decision to place a loved one in a nursing home.

Whereas Petit chose to risk his life on the wire for 30 minutes and had to be coaxed off of it by the police, HD people and their families are forced onto the wire and cannot get off. Although many still find moments of joy, all long for the treatment or cure that will end this ultimately nightmarish act.

Passion vs. obsession

My own personal tightrope includes yet another kind of balancing act: between passion and obsession.

Since joining the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego) shortly after my mother’s 1995 diagnosis, I have put great passion into the cause.

But sometimes I lose my balance, and the passion becomes obsession.

After speaking at Alnylam Pharmaceuticals in Cambridge, MA, on May 17 and holding a potential cure in my hands in the company’s lab, I couldn’t wait to share my excitement with others in the HD community. On the plane ride back from the East Coast on May 21, I worked on a blog article about the Alnylam trip non-stop for six hours.

My passion remained on full throttle when I arrived at home. I practically ignored my family and other activities for the next several days. Only after I posted the Alnylam article on May 25 could I start to come down from the trip.

A radio interview

In the midst of the Alnylam trip and its aftermath I needed to decide whether to take yet another huge step out of the "HD closet": going on the radio with two other advocates to talk about the disease and our personal situations.

I consulted with my wife and weighed the potential impact of the interview on my family and job. After giving up so many dreams because of Huntington’s disease, my wife doesn’t want our family, including our 10-year-old, HD-free daughter, to deal with the disease until it’s absolutely necessary.

My wife pointed out my obsession after the Alnylam trip. But she didn’t want the rest of the family to become obsessed.

That night I had a very long and intense dream about HD involving my relationship with my daughter. In the dream, as in life, I wanted her to know the truth about HD. But I also wanted to protect and guide her.

I ultimately decided that the opportunity to speak out on HD was too important to pass up. There was no time to think through the consequences. I would deal with them, whatever they might be, as they arose.

In short, I would improvise – just as Petit improvised during the planning and execution of his walk between the Twin Towers.

So, on May 26, just hours after posting the Alnylam article, I participated in a half-hour interview on the Clear Channel radio network. I explained the symptoms of HD and my family’s struggle with the disease, including my exit from the HD closet. (Click here for more on the program and to listen to the podcast.)

So far, I have received feedback on the interview only from people in the HD community. But I am preparing myself for eventual questions and comments by others, including people at work, where only one trusted friend knows about my situation.

‘HD doesn’t have me’

As another good friend observed as we discussed HD and professional commitments, a very fine line exists between passion and obsession. Indeed, because of that fine line, it’s very easy to fall off the tightrope.

This same friend pointed out that I must avoid letting my quest for the cure compromise my health. “You can’t let the ‘cure’ kill you,” he said.

I later remembered how, in a similar situation, some Huntington’s disease caregivers become burned out or even die before their loved ones because they fail to rest or seek enjoyment.

As I walk the Huntington’s high wire, I am reminded of the sage phrase repeated by a number of HD people I’ve had contact with in recent years: “I have HD – but HD doesn’t have me!”

HD indeed had me for a while following my Alnylam trip and the radio interview.

But I won back control over the Memorial Day weekend. As we shopped with our daughter for items for a barbecue we were hosting for friends, my wife smiled and put her arm around me lovingly.

HD no longer had me. I was back in the fold.

The shadow career

After my mother was diagnosed with Huntington’s disease in 1995, I joined the local support group of the Huntington’s Disease Society of America (HDSA). In 1998, I became a member of the HDSA-San Diego Board of Directors in the cause to raise awareness about HD and the need for treatments and a cure. After testing positive for HD in 1999, I intensified my efforts even further.

As I watched HD destroy Mom’s brain and worried about the inevitable onset of my own symptoms, my activism developed into a second career.

This was a secret career – one that I hid from everybody outside the HD community because of the very real possibility of genetic discrimination in the workplace, and in my field as a college professor and specialist in Brazilian history.

This has been my “shadow career.”

A bombshell

At the start of my first career, I had to keep HD in the back of my mind. I was striving to obtain tenure at my university job. This required complete dedication, with many 12-hour days, lost weekends, and weeks of forfeited vacation dedicated to research and publications, the gold standard of scholarly distinction and advancement.

In the first couple years, I felt completely exhausted, physically and emotionally. Getting tenure is like making partner at a law firm. The institution virtually owns you for the first six or seven years.

Then, just as things were starting to look a little brighter during my third year, I received a bombshell: my mother had HD, and I had a 50-50 chance of inheriting the condition. I could pass it on to the potential children my wife and I were contemplating.

That news transformed my life forever. Since that moment, the threat of HD and its many social implications (for marriage, family, insurance, health care, and income) severely impacted my career.

Focusing on the essentials

I first reacted to the emotional jolt by working even harder for professional success. I was 36, and I knew that I could start getting symptoms in my 40s. So I wanted to squeeze in as much life as possible – even to the point of neglecting my wife.

In June 1999 I tested positive. That was another huge blow. In January 2000, our daughter tested negative in the womb, a huge relief to my wife and me. She was born healthy in June 2000. (Click here to read more about these two genetic tests.)

Along with my decision to join the HDSA-San Diego board, those new, life-changing experiences forced me to change perspective about my career.

The birth of a first child brings most couples a deeper understanding of life’s meaning and responsibilities. The birth of our “miracle baby” especially moved me to focus on the essentials of life.

Sadly, Mom had already lost the ability to talk, and she couldn’t even properly hold our baby on her lap during my parents’ trips from Ohio to our home in San Diego.

As Huntington’s disease attacked Mom, I felt an urgency to get my own psyche in order to become a better father and husband in the potentially very short window of time of good health that remained. I worked extremely hard with my psychotherapist, my “mind coach,” to clear my mind of as much emotional clutter as possible.

Racing against time, I also wanted to multiply my efforts in the HD cause.

Hiding my activism

Juggling a new baby, household, job, and HD activism, I stopped going the extra mile at work.

Even with tenure in hand, this was highly risky. Office politics can often trump competence, as I learned in 2005 during my attempt to obtain a promotion.

So, while genetic discrimination remained my primary concern, I also hid my HD activism from my professional colleagues because I feared some might not sympathize with my predicament.

I have noticed, for instance, that as a man I am not expected to act as the primary caregiver for my daughter, whereas it’s considered perfectly natural for a woman to take on such a role.

In such an environment, I felt it would be extremely difficult for some co-workers to understand my commitment to the Huntington’s disease cause.

Until recently, I’ve kept a near-perfect firewall between my activism and my job. In that respect, the pen name “Gene Veritas” has lent me great protection.

Doubts and guilt

My shadow career looms large.

The extra hours I once spent on my paid job I now dedicate to the HD cause. I maintain professionalism in the workplace, but I no longer strive for the academic glory that can be achieved only with intense, ongoing dedication to intellectual matters.

Lately my secret career has cast a great shadow of guilt and doubt over my life.

In 2007, I had received an excellent job offer at another university, but I turned it down because of the very likely possibility that we will need to depend on my wife’s income when my HD symptoms begin. (Click here to read more.) She teaches in the public school system and, barring a fiscal meltdown, will receive a generous pension. So my wife and I have decided to make a stand in San Diego.

But the question rankles in my mind: what would my career have been like without HD? What new opportunities might our family have encountered had I been able to advance on a regular basis?

We are financial prisoners of HD. Long ago we abandoned our goal of a summer (and eventually retirement) home in Brazil, my wife’s country and where she could fully enjoy her home family and culture without having to rent as a short-term visitor or rely on relatives for lodging.

As my wife and I are constantly reminded, HD has robbed us of many dreams.

Public appearances

Recently I started taking my activism to an even higher level – and in public.

On February 7, I delivered the keynote address to the 6th Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative."

On May 7, I will speak at the convention of HDSA’s Northern California Chapter. And on May 17, I will make a presentation in Cambridge, MA, at Alnylam Pharmaceuticals, which hopes to bring a potentially revolutionary treatment into human clinical trials within the next year or so. At both events I will speak on the topic of my activism and coping with HD.

I will visit HDSA national headquarters a couple days later, and in June I am tentatively scheduled to appear as an HD community representative at a Huntington’s disease meeting at the National Institute of Neurological Disorders and Stroke (NINDS) in Washington, D.C.

Crashing in the fog

As I come out of the shadows, this second career could completely overshadows my regular job.

This huge transformation in my activism has preoccupied me now for more than a year.

The other day it left me so emotionally foggy that I became distracted while driving and accidentally crashed my brand new car (!) into a wall. I was okay, but the mishap caused $1,600 in damage to the vehicle.

Just a couple days later, I almost rear-ended another car as I drove down a familiar street.

In the case of several HD people I know, frequent, seemingly inexplicable car accidents or other driving difficulties were one of the first signs of symptoms.

Are my symptoms starting?

Or, as a friend pointed out, am I a “multi-processor” with much on my mind? (After all, I crashed a previous new car into a wall shortly after I received my HD test results. That was long before any symptoms were expected to occur, but I was unnerved.)

Part of the fog comes from the deep sadness I feel as my first career becomes less and less significant. And that causes the guilt about that career to increase.

No time for wavering

In Palm Springs, I spoke on the topic of “unmasking Gene Veritas” and reintegrating the two, until now separate parts of my life.

Since then, I have also have begun thinking of possible ways to integrate my two careers.

So much is on the line: my life, the lives of my wife and daughter, the lives of tens of thousands of HD-affected and at-risk individuals and their families.

As I completely abandon the shadows, I must resolutely overcome doubt and guilt. It is not a time for wavering. It is a time for conquering Huntington’s disease.