The Huntington’s disease community can’t afford to lose momentum

The Huntington’s disease community can’t afford to lose momentum in the quest for treatments for this incurable disorder.

As I noted in my last article, fatigue can set in for advocates and family members. This is understandable, given the tiring demands of caregiving, the frequent feelings of hopelessness in the face of the “devil of all diseases,” and the immense challenge faced by scientists – and the population needed to participate in drug trials – in devising revolutionary drugs that reach the brain and prevent its cells from dying.

Interrupting my own momentum in writing a book in my field as a Brazil specialist, I summoned the strength to once again focus on HD. I traveled coast-to-coast twice in a little more than 72 hours to give a speech about a crucial upcoming HD clinical trial and to interview a prominent scientist engaged in the search for treatments. It was an intense time.

My trip on April 10 began inauspiciously, as a late departure from San Diego caused us to approach Atlanta as thunderstorms struck, leading the flight to detour to Birmingham, AL. Arriving in Atlanta close to midnight, I had missed my connection to Providence. After finally finding a hotel 20 miles from the airport, I could only sleep four hours. The morning flight to Providence also left late, because of tardy pilots.

Travelers do face such stresses, especially as service in the airline industry declines, but as a carrier of the HD gene mutation concerned about disease onset, I especially need to avoid them.

As it became clear that I would miss my 9 a.m. keynote talk on April 11 in Norwich, CT, Laura Kokoska, an advocate for the Connecticut affiliate of the Huntington’s Disease Society of America (HDSA-CT) whose mother has HD, helped me via cell phone calls and texts to calmly consider alternatives. She and another advocate, Val Kim, whisked me from Providence to Norwich, serving me lunch in the car. We arrived in time for me to speak in the last slot of the day.

The audience of some 30 was anxious to hear me provide an HD family member’s perspective on one of the most significant steps towards treatments since the discovery of the huntingtin gene in 1993: the Roche/Isis gene-silencing trial, set to start this year at several sites in Canada, England, and Germany.

HDSA-CT education event participants (from left to right): James McGann, Debbie Pausig, Gene Veritas (aka Kenneth Serbin), Laura Kokoska, Holly Broadbent, and Sue McGann

A historic attack on the genetic roots

I first explained how my mother’s demise from HD and my positive test for the genetic mutation in 1999 led me to delve into the science of Huntington’s disease. Then I described how since early 2008 I have tracked the program by Isis Pharmaceuticals, Inc., to stop HD at its genetic roots. In 2013 Isis partnered with the pharmaceutical giant Roche to prepare for a gene-silencing clinical trial in HD.

“This trial is a historic trial,” I said. “It’s a big moment in the history of our community, and also in the history of science.”

Isis and Roche aim to test a drug known as an antisense oligonucleotide (ASO). “That’s a fancy term for basically saying it’s an artificial piece of DNA,” I continued. “That is [a] ‘laser-guided missile’ that is supposed to go into the brain cells, and it will block the production of the huntingtin RNA and the protein.[…] The protein is what is causing the problems in the cell. They’re also thinking now that the RNA is also causing problems within the cell, that they want to cut down the amount of the RNA, too.

“This clinical trial […] is the first time that someone is going after the genetic roots of the disease,” I stressed. “That is an immense motive for hope in our community.” And that’s why I’m so excited about the project and follow it so closely.

Being realistic

I showed PowerPoint slides of photos of the Isis facility and the company’s scientists, including Frank Bennett, Ph.D., the senior vice president for research and the head of the HD project. I also noted the important support for the project from CHDI Foundation, Inc., and the lab of Donald Cleveland, Ph.D., at the University of California, San Diego.

I reminded the audience that enthusiasm must be coupled with patience: the HD community must recognize the time it takes to develop drugs and also brace itself for failures in the quest for treatments. This year Isis and Roche are initiating Phase I of the trial, aiming only to test the safety and tolerability of the ASO.

Potential Phases II and III would examine the drug’s efficacy. In all, it could take five years or more to complete all three phases.

“We have to be realistic,” I said. “Ninety percent of drugs that go into clinical trials do not make it to market.[…] It takes a lot of shots on goal before you finally get a goal.[…] We have to keep in mind that it’s a slow, painstaking, and deliberate process.”

You can watch my speech in the video below.

Hope for Huntington’s Disease Families: The Isis/Roche Gene-Silencing Clinical Trial from Gene Veritas on Vimeo.

Returning to Yale

After the event I rode to New Haven with Debbie Pausig, a marriage and family therapist, grief counselor, and HDSA-CT support group leader. Debbie recently published An AffaiR Worth Remembering With Huntington’s Disease: Incurable Love & Intimacy During an Incurable Illness, a memoir of her relationship with her late, HD-stricken husband. Debbie capitalized the “r” in “affair” – and it’s reversed on the cover of the actual book – to emphasize the many unusual twists in her story.

Later I visited the campus of Yale University, my alma mater, and ate pizza at an old haunt. It was only the fourth time I’ve returned to Yale since graduating with a B.A. in history in 1982. In 2012 I visited Yale to interview a number of scientists working on HD (click here to read more), including the preparation of clinical trials.

“Felt like an undergrad again walking through freezing campus,” I texted an old classmate while watching the students and remembering the exhilarating possibilities of youth.

In my hotel room, mixing in baking soda and Epsom salt from a care package put together by Laura, I relaxed in a hot bath. As Laura put it, the bath would help my body recover from the traumatic plane trip.

Gene Veritas (aka Kenneth Serbin) outside Wall Street Pizza (formerly Naples) in New Haven

A science tour and lunch with old friends

The next morning I took a tour of Yale’s Magnetic Resonance Research Center with its long-time director, Doug Rothman, who received his Ph.D. from Yale in 1987. A professor of diagnostic radiology and biomedical engineering at the Yale School of Medicine, Dr. Rothman is one of the world’s leading pioneers in research in MRI, magnetic resonance spectroscopy, and quantitative neuroscience with magnetic resonance.

A future article will detail my interview with Dr. Rothman about his research into key questions about the mitochondria, the powerhouses of our cells, and their role in HD.

I lunched with classmate Paul Bass and his wife Carole (Yale 1983), two former colleagues on the Yale Daily News and accomplished journalists in New Haven. The Basses have long served as confidantes.  

Paul’s innovative online community newspaper, the New Haven Independent, was one of the first sites to link to this blog, and Carole blogged for the Yale Alumni Magazine about my definitive exit from the HD closet in 2012.

I welled with emotion at seeing my old friends, hearing good news about their lives and young adult daughters, and sharing my joy at having remained asymptomatic beyond my mother’s age of onset.

Paul and Carole Bass (photo by Gene Veritas)

Supporters of the HD cause

That evening in New York I dined with another Yale friend, Norman Oder (class of 1983), and his girlfriend Maryanne. A journalist, editor, and founder of the watchdog blog Atlantic Yards/Pacific Park Report, Norman urged me to start this blog and has edited virtually every piece since its inception ten years ago.

During my 24 hours in New York, Norman and I had several deep conversations about my future health, the destiny of this blog, and numerous aspects of the HD movement. He is my “HD alter ego.”

On April 13, I had lunch with yet another classmate, Adam Glick, a businessman and philanthropist who has generously supported the HD cause. Adam’s real estate company owns the Parker Palm Springs, the hotel in Palm Springs, CA, that expertly hosts the annual, CHDI-sponsored HD Therapeutics Conference when it takes place in the U.S.

I gave Adam a rundown of the 2015 conference, which I attended. We also discussed the “nocebo effect,” the idea that the expectation of illness can bring on symptoms even though a person is not ill.

I told Adam that last year two major supplements – coenzyme Q10 and creatine – thought to have potential for treating HD were proven ineffective. I speculated that my belief in these supplements’ efficacy might have contributed to my lack of symptoms.

Quiet resolve

At Maryanne’s suggestion, I visited the Museum of Modern Art (MOMA) to view the special exhibition of Jacob Lawrence’s series of paintings about the great migration of African-Americans from the rural South to the urban North in the mid-20th century.

This significant event in our nation’s history is forgotten by many. As a professional historian, I was both intrigued and moved by the tempera paintings depicting the hardships of African-Americans in the South and the brave decision by millions to uproot themselves to find a better life.

My teenage daughter, a first-year high school student, had asked me to take photos of murals in New York. I didn’t have time to search for murals, but Lawrence’s paintings are mural-like and tell a vast story. I will soon show them to her.

Visiting MOMA gave me a break from the HD-laden aspects of my trip. Yet I could not help but draw a parallel between the quiet resolve of the migrants and the yearning of the HD community for liberation from the yoke of Huntington’s disease.

Through such resolve we can maintain the momentum necessary for defeating HD.

The African-American South-North migration of the mid-20th century as depicted in one of the paintings of Jacob Lawrence (photo by Gene Veritas)

(I wish to thank the individuals and organizations that organized the conference and sponsored my trip: Sue McGann, HDSA-CT, and the Wireless Zone Foundation.)

(Disclosure: I hold a symbolic amount of Isis Pharmaceuticals stock.)

A new, more holistic view of Huntington’s disease: the systems/P4 approach

When I learned in late 1995 that my mother suffered from Huntington’s disease, a disorder unknown to my family, my reaction went from perplexity to utter shock as I listened to the details: HD caused shaking and severe dementia, was fatal, and had no treatment or cure.

Over the next decade, as my mother lost the ability to walk, talk, eat, and care for herself, her doctors could do little to help.

With a 50-50 chance of inheriting HD, I felt desperate as I waited in limbo. In 1999, my positive test for HD multiplied my fears.

When my mother died in 2006, a treatment didn’t even appear remote.

Even today, the medicines prescribed for HD patients treat only symptoms, sometimes with serious side effects. They do not arrest the disease in any way.

The lack of therapies (a medically more appropriate word than “treatments”) devastates affected families, perhaps more than any other of the cruel realities of HD.

However, as I described in my previous two articles, leading HD researchers are planning for eight new clinical trials in just the next two years (click here and here to read more).

The vastly increased knowledge of HD’s causes and the very real possibility of effective therapies behoove us to think about HD in a radically new way. Instead of reacting with the traditional (and quite understandable) fear and pessimism, I believe we must now embrace hope and optimism.

Rather than anticipating the worst, we must expect the best, even if we cannot predict the timetable.

Shifting from ‘incurable’ to ‘treatable’

To turn the emotional tide and spur greater patient and family involvement in crucial research and clinical trials, the HD community must replace the phrase “HD is incurable” with “HD is treatable” or, perhaps more precisely, “HD will be effectively treatable.”

“For so long we’ve talked about HD as an incurable disease,” I told an audience of some 100 people at the southern California Huntington’s Disease Regional Education Day at the University of California, Irvine, on March 10, sponsored by the Huntington's Disease Society of America (HDSA), Lundbeck, and Remind. “That keeps people behind the mask, keeps them in the closet, keeps them in denial. But the fact that you have the trials coming on line means that this statement is no longer accurate. It’s no longer an incurable disease. I believe it’s a disease that’s going to be treated, and going to be treated successfully sometime in the next five to ten years.

“So going back to the old HDSA phrase of some years ago: let’s make this the last generation with HD. I believe it’s going to be the last generation with HD, or that has HD in the way we’ve known HD, because I think we’re going to be controlling and managing HD.”

You can see the entirety of my speech in the video below.



Solid reasons for hope

People have occasionally cautioned me against raising false hopes, warning that if a potential drug fails, some in the HD community might withdraw from involvement in research and clinical trials. Many remember how in the early 2000s some people placed great hope in LAX-101 (also known as Miraxion or ethyl-EPA), a fish-oil extract, only to experience a letdown after mainly ineffective clinical trial results.

The cold, hard fact is that 90 percent of all clinical trials do not produce an actual drug. It takes time for scientists and drug companies to develop, test, and fine-tune drugs.

Furthermore, scientists do not view those 90 percent as unsuccessful or “failures.” Rather, a trial that ends without a successful therapy simply indicates that researchers should make a correction in the path or choose a different one.

Therefore, we must not give up if a trial or therapy does not fulfill our personal expectations. Drug discovery requires the participation of the entire HD community. Only by working together can we assemble all of the pieces of the therapy puzzle.

I also think that we have solid reasons for hope.

Having followed HD research the past 15 years, I believe the current lineup of planned trials stands out as qualitatively far different from LAX-101 and other supplement-like substances in other trials or drugs originally designed for other conditions that didn’t prove effective in HD.

The new generation of potential drugs benefits from new biological discoveries (such as RNA interference), new drug-discovery technologies (such as high-throughput screening), and a much greater (though still far from complete) understanding of how HD damages the brain.

In addition, in the words of Dr. Robert Pacifici, the chief scientific officer of CHDI Management, Inc., the multi-million-dollar HD therapy initiative, the new HD drug candidates are “custom-crafted” for HD.

A visionary turns to HD research

The annual CHDI HD Therapeutics Conferences provide a panorama of the progress in HD research. I am preparing a report on the scientific findings of the seventh conference, held February 27-March 1 in Palm Springs, CA.

Here I want to reflect on one speaker, Dr. Lee Hood, whose scientific vision is beginning to influence the search for HD therapies.

An M.D., Ph.D., Dr. Hood worked with colleagues to invent four instruments important for the success of the Genome Project (as well as other research): the DNA sequencer and synthesizer and the protein sequencer and synthesizer. Dr. Hood helped to found 14 biotech companies, holds 30 patents, and stands among only ten people in the world to belong to all of three major American scientific organizations, the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. In 1987 he won the Lasker Basic Medical Research Award (the American equivalent of the Nobel Prize).

In 2000, Dr. Hood founded the Institute for Systems Biology (ISB). Located in Seattle, the non-profit ISB teams scientists and technologists from many disciplines to pioneer the future of research in biology, biotechnology, medicine, environmental science, and science education. Dr. Hood is the ISB president.

Dr. Lee Hood at the 7th Annual CHDI HD Therapeutics Conference (photo by Gene Veritas)

When he turned 70 in 2008, Dr. Hood stated that he aimed to achieve the “most ambitious things … in my career,” including the advancement of systems biology and advocating for the widespread adoption of “proactive P4 medicine” (predictive, preventive, personalized, and participatory).

Among other cutting-edge collaborative projects, ISB has pioneered proteomics, the study of the more than 23,000 proteins in the human body.

“What we’ve done is to democratize proteins – that is, make them accessible to all biologists – just as the Human Genome Project democratized genes and made them available to all biologists,” Dr. Hood told the audience at the HD Therapeutics Conference.

A new, even more exciting project aims to develop “global proteomic analysis” by digitizing all of the human peptides (the chemical building blocks of proteins), Dr. Hood added. Just as people can hone in on a geographic location using Google Earth, scientists will soon compare peptides in a digital catalogue, he said.

The next stage will involve studying proteomics and genomics together, he said.

The importance of systems biology

In his HD Therapeutics Conference presentation, “Systems Approaches to Neurodegenerative Diseases and the Emergence of Transforming Technologies,” Dr. Hood explained systems biology (SB) and how it can impact the search for HD therapies.

SB emerged because of two revolutions: Darwin’s work on evolution, which revealed the enormous complexity of biology and disease, and the late-20th-century explosion in digitized biological information.

“We need this thing called systems biology to de-convolute that complexity,” Dr. Hood stated.

In a nutshell, SB offers a holistic view of disease. In Dr. Hood’s words, the body is a hierarchical “network of networks” that interact – beginning with genes, extending to molecules, reaching the organs, rising up to the individual human, and ultimately including society and the physical environment.

In my own shorthand, I think of SB as the “big picture of disease.”

SB uses the power of computing to mine, integrate, and visualize very large and complex sets of biological information, Dr. Hood added.

He described the SB approach to disease as providing an “informational view of science” that seeks to “capture the dynamics of disease.”

In this approach, biology drives technology, which in turn drives analytical tools (computation).

“It’s this holy trinity of biology driving technology driving computation that’s really at the heart of systems biology,” Dr. Hood explained. “I realized this first in the context of developing the automated DNA sequencer.”

SB scientists seek to tackle a complex system like HD, build a model of the disease, test that model, and then “perturb” its system repeatedly to see the disease mechanism at work. From this experimentation, they draw conclusions about the disease and how to treat it.

Hunting for HD modifier genes

In collaboration with leading HD specialists, ISB has set out to identify modifier genes for HD. HD results from a mutated form of the huntingtin gene, but one or more modifier genes may affect the onset of the disease. This would help explain why onset occurs at different times in people with the exact same degree of mutation.

To conduct this research, ISB has resorted to the SB approach of gathering large amounts of genetic information.

“We’ve now analyzed more than 60 human genomes from families that have Huntington’s disease,” Dr. Hood told the HD Therapeutics Conference audience. “What we’ve found is these families place enormously interesting constraints on areas where you may find modifiers, but we don’t have sufficient data at this point to really identify candidates. What we’re excited about is integrating these data together with the GWAS (genome-wide association study) data that will be coming later in the year.”

SB and a better understanding of HD

Dr. Hood concluded that SB can assist a search for HD therapies in four other ways. First, it can bring “new insights” into how HD works.

Secondly, “we can make blood into a window for health and disease” by discovering and measuring markers of “drug toxicity as well as disease diagnostics.”

Third, in line with its holistic outlook, SB provides “new approaches to analyzing multi-organ responses.” So far, most HD research has focused on the brain. However, scientists know that the huntingtin gene is expressed in every cell in the body and affects muscle and fat.

Fourth, SB presents “new approaches to drug target discovery” that could speed the arrival of therapies.

Finally, Dr. Hood added, “the digitization of information is going to be absolutely fascinating,” allowing scientists ever greater access to what happens in HD patients and helping them to plan treatments.

You can watch the entirety of Dr. Hood’s presentation in the video below.



P4: predictive, preventive, personalized, participatory

SB is laying the basis for P4 medicine, which holds great relevance not just for HD, but all diseases and the promotion of wellness in a future global system of health.

“P4 medicine, the clinical face of systems medicine, has two major objectives: to quantize wellness and to demystify disease,” Dr. Hood and a co-author write in an article in the March 2012 issue of the journal New Biotechnology that he sent me shortly after the HD Therapeutics Conference. “Patients and consumers will be a major driver in the realization of P4 medicine through their participation in medically oriented social networks directed at improving their own healthcare.”

Several organizations have partnered with ISB to pioneer programs in P4. If it is implemented on a wide scale, Dr. Hood predicts that it will revolutionize our healthcare system. Costs will plummet, everybody will carry a health monitoring device, and diseases will be predicted and prevented long before onset as the result of tiny blood samples taken from a pin prick, the article states.

“P4 medicine will not be confined to clinics and hospitals,” the article continues. “It will be practiced in the home, as activated and networked consumers use new information, tools and resources such as wellness and navigation coaches and digital health information devices and systems to better manage their health.”

Care will be “tailored to the circumstances of each individual.”

An amazing transition

Systems biology and P4 medicine provide a vastly different picture of Huntington’s disease from the largely hopeless one painted for me and my family after my mother’s diagnosis in 1995.

And we felt so alone in the impersonal world of traditional medicine.

The fresh, fundamental SB/P4 approach has led to a deeper understanding of the work that lies ahead in the search for HD therapies.

CHDI has adopted the SB approach by hiring one of its key practitioners, Dr. Keith Elliston, to serve as its vice president of systems biology. Dr. Elliston also spoke at the HD Therapeutics Conference.

Dr. Keith Elliston (in cap) confers with scientists at the HD Therapeutics Conference (photo by Gene Veritas).

“I’m also very excited that CHDI has chosen to embrace systems biology and to make that a key tenet of its drug-discovery process,” Dr. Nathan Goodman, an ISB researcher and member of an HD-affected family, told the audience. “In essence, this makes CHDI the first systems-biology-driven therapeutics company, yet another in the long line of firsts that CHDI has accomplished. This is a very big step not just for the Huntington’s disease field, but for all of biology, all of life sciences, the entire industry of therapeutics. This is an amazing transition by CHDI.”

As SB and P4 could very likely represent the future of medicine, I’m betting they will also play a major role in removing HD as a threat to me, my family, and the tens of thousands of families around the world impacted by HD.

We in the HD community have fulfilled the first P: genetic testing allows us to predict our future.

We now must focus on the other Ps: preventing HD; receiving personalized diagnosis and treatment that will optimize our health; and attaining wellness and a long life as a result of having helped find effective treatments through proactive participation in HD research and clinical trials and the contribution of our biological information to a global data bank.

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.