Blog article No. 300: who exactly is Gene Veritas?

 

On January 10, 2005, I began the first post in this blog with a simple but consequential sentence: “My name is Gene Veritas and I am at risk for Huntington’s disease.”

 

Today, 16 years and two months later, after my mother’s death from Huntington’s at age 68 in 2006 and my own long struggle to avoid disease onset, I am writing my 300th post.

 

Now 61, I never expected to get this far. Starting in her late 40s, my mother’s symptoms left her progressively unable to care for herself and ultimately bedridden. And I inherited from her the same degree of mutation in the huntingtin gene – which I long thought portended the same fate.

 

As I have noted often in recent years, I feel extremely lucky to remain asymptomatic. Although there is (as yet) no genetic test available to individuals to pinpoint the reason, researchers have discovered key modifier genes that slow or hasten onset among people with identical mutations (click here to read more). Also, as doctors and researchers have observed, my efforts to lead a healthy lifestyle likely have also helped.

 

In the early years of the blog, writing under the protection of my Gene Veritas pseudonym, I focused mainly on my family’s struggles with the many medical and psychosocial ramifications of HD. More recently, with the tremendous advances in HD research of the past decade, I have emphasized the science and the advent of crucial clinical trials. Those trials have brought unprecedented hope for the HD community.

 

However, in the whirlwind of HD advocacy and writing, I have not paused to reflect on the deeper meaning of my alias. Even after I went fully public as Kenneth P. Serbin nine years ago in an article in The Chronicle of Higher Education, I am still widely known in the HD community as Gene Veritas.

 

I have relished explaining a pen name that has become my trademark. In my HD work, I actually prefer the pseudonym, which not only intrigues people but also instantly focuses our interaction on the profound implications of Huntington’s.

 

To mark my blogging milestone, I thus want to clarify two things: who exactly is Gene Veritas? And what does that name mean?

 

A college professor and family man

 

Huntington’s, as a 100-percent genetic disorder, always involves stories about families.

 

After the news of my mother’s diagnosis blindsided my wife Regina and me in late 1995, our life plans changed dramatically. A future as my potential caregiver has loomed over Regina ever since. She is ever thankful about my delayed onset.

 

We forged ahead as best we could. Over the past two decades, we have brought our HD-free daughter Bianca to the threshold of adulthood. Bianca expects to graduate from college in 2022.

 

I am in my 28th year as a history professor at the University of San Diego, and Regina works as an instructional coordinator for the San Diego Unified School District.

 

As a family, we have been active in the local chapter of the Huntington’s Disease Society of America. In 2017, we traveled to Rome for one of the most extraordinary moments in our journey with HD, “HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America.”

 

In the doctor-recommended enrichment and exercise that I practice, I have included the canine member of our family, our cockapoo Lenny, with long walks on diverse routes through our neighborhood.

 

Gene Veritas (aka Kenneth P. Serbin) with wife Regina, daughter Bianca, and dog Lenny (family photo)

 

Representing our common struggles

 

I began this blog under “Gene Veritas” because I lived in the “terrible and lonely HD closet,” fearing discrimination on the job and in healthcare and insurance matters. I built what I have described as an “absolute firewall” between my HD reality and the rest of my life.

 

In February 2011, I took a major step out of that closet by delivering the keynote speech at the “Super Bowl” of HD research, the Sixth Annual Huntington’s Disease Therapeutics Conference, sponsored by CHDI Foundation, Inc., the nonprofit virtual biotech solely dedicated to finding HD treatments. It was held in Palm Springs, CA.

 

About 250 prominent scientists, physicians, drug company representatives, and others listened to my speech, which was titled “Blog Entry 85 … Unmasking the World of Gene Veritas: An Activist Copes with the Threat of Huntington’s Disease.” (I referred to an “entry” instead of “post,” because of the diary-like nature of the blog in the early, anonymous years. Now I use the term “article,” because the posts have become more in-depth and sometimes run several thousand words or more.)

 

As I wrote in an article about that key moment, despite revealing my real name to the audience, my penname “‘Gene Veritas’ will still live on in cyberspace.[…] Through its anonymity and universality, it symbolizes the common struggles of families threatened by HD and numerous other neurological and genetic diseases.”

 

Indeed, in many talks since then I have introduced myself with both my real name and pseudonym.

 

‘The truth in my genes’

 

I explain to people that “Gene Veritas” means “the truth in my genes.”

 

A “gene” is a sequence of DNA, the code that programs our development as humans and gives us particular characteristics. “Veritas” is Latin for “truth.”

 

The truth of my future lies in the mutant huntingtin gene that I inherited from my mother.

 

I also have a personal connection to “veritas”: it forms part of the motto “lux et veritas” (light and truth) on the seal of my alma mater, Yale University.

 

The connection to Yale bubbled up from my subconscious while I was searching for a pseudonym. Surely Yale also came to mind because of the solidarity, advice, and assistance I have received from fellow alumni (click here, here, and here to read more).

 

As one observed, because of the devastation caused by HD, the pseudonym can also represent a grim pun on the school motto.

 

We are all Gene Veritas

 

On March 8, I participated in an online interview conducted by HD global advocate Charles Sabine and Simon Noble, Ph.D., CHDI’s communications director. They wanted to learn more about the Gene Veritas facet of my life.

 

Dr. Noble asked me whether I had an alter ego and other identities, in line with the ideas of 2010 keynoter and graphic novelist Steven Seagle, who has addressed his family’s way of confronting Huntington’s by juxtaposing the reality of disabling HD with the fantasy of Superman.

 

“Gene Veritas” is my alter ego, I said.

 

So, Dr. Noble wanted to know, how did the Gene Veritas alter ego protect me? Did it allow me to do other things? Did I become a different person in some respect? Were there positives to being Gene Veritas?

 

“Absolutely,” I responded. “Being anonymous for so many years allowed me to be completely honest about Huntington’s disease. Those first years of the blog were a complete explosion of HD honesty – talking about the feelings, talking about the discrimination, talking about the anger, the hurt, the pain, worrying about my mother, seeing my mother die from the disease. Those early years were really, really hard.”

 

This blog and “Gene Veritas” have also served as coping mechanisms, I added, and they allowed me to build awareness about HD.

 

“But how to build awareness anonymously?” I continued. “It’s like a contradiction in terms. That’s why ‘Gene Veritas’ became so important, because I was somebody. I couldn’t be Ken Serbin, but I could be Gene Veritas.”

 

Pondering further the universality of my pseudonym, I observed: “It’s my story, but it’s really the story of the HD community. Anybody could be Gene Veritas in the HD community. Because I think we’ve all been at one point or another a kind of Gene Veritas, at least when we first find out about Huntington’s. It’s representative. It’s something that has a broad meaning to it.”

 

Writing the history of the HD movement

 

In this blog, my CHDI keynote, and other speeches, I have documented the new and harrowing human experience of living in the gray zone between a genetic test result and onset of a disease.

 

In my CHDI speech, I showed a slide with a simple breakdown of main blog topics to that point. Information about the disease and research was the leading topic, followed by articles on my mother, fear of onset, and coping.

 

I will do a more fine-grained content analysis of posts for an academic article on the blog as a coping mechanism, fount of information for the HD community, and source of insight into the fight against HD and the search for therapies. I will submit the article to a scientific or medical journal.

 

I am also planning a book on the history of the Huntington’s disease cause, tentatively titled “Racing Against the Genetic Clock: A History of the Huntington’s Disease Movement and the Biomedical Revolution.” The blog will serve as a considerable primary source (a document or other material produced by a participant in a historical event) for my research and/or future historians of the HD cause.

 

In academic year 2021-2022, I will dedicate an expected sabbatical (a leave from teaching and other on-campus duties) to the book project. I will consult researchers, physicians, and members of the HD community about the key themes.

 

I earnestly hope to recount in this blog and my book the achievement of effective treatments for HD.

Fear of onset: the inescapable reality of the Huntington’s disease gene carrier

As a carrier of the devastating and ultimately deadly genetic mutation for Huntington’s disease, I have worked hard to live as normally as possible. This blog is replete with examples of coping strategies and ways in which I have strived to balance work, leisure, family, and HD advocacy.

At 54, my HD-stricken mother was rapidly declining, heading towards a troubling and terrible death at the age of 68. Today, at 54, I continue to enjoy the gift of good health – the major reason I can often feel “normal.” Scientists are searching to discover the reasons for the wide variability in the age of onset observed in people, like my mother and me, who have the same level of mutation.

Yet my fear of onset often creeps back in.

Recalling a time of innocence

The past few weeks I’ve been so busy with the “normal” that I’ve had no time to write in this blog.

At work, I’m transitioning from five-and-a-half years as departmental chair to a year-long sabbatical, during which I aim to write a long-gestating book on the history of former Brazilian radicals now in positions of power. I’m also teaching an intensive, three-week summer session course on the history of Mexico. The next year promises to be an engaging, challenging time.

The transition has required an understandably disruptive move to a new office, but also allowed me to dispose of unneeded books and papers.

As I rummaged through old files and letters, I found myself reminiscing about the seemingly innocent period of my life before Huntington’s struck my mother.

It would be great, I thought, not to have to worry about onset. Without the threat of HD, which led me to expand my scholarly endeavors into the history of science, technology, and medicine, I could once again focus exclusively on the history of Brazil.

Watching for early symptoms

I’m also working out the logistics for my upcoming trip to the University of Iowa in Iowa City for my follow-up participation in PREDICT-HD.

An “observational study of the earliest signs of Huntington’s disease,” PREDICT-HD has aimed at creating key standards for predicting onset and measuring the rate of disease progression.

I’ll be staring onset in the face – and wondering about my performance on the battery of tests.

A visit to Auspex

I discussed my fear of onset and reiterated our community’s urgent need for effective treatments in an intense, 80-minute get-acquainted conversation last week with Pratik Shah, Ph.D., the president and CEO of Auspex Pharmaceuticals.

An investor-funded San Diego firm focused exclusively on central nervous system disorders and orphan diseases, Auspex struck me as made-to-order for the fight against HD. It is currently conducting clinical trials for a drug called SD-809, aimed at treating chorea, the involuntary abnormal movements produced by HD.

SD-809 (dutetrabenazine) is a potentially improved version of tetrabenazine, a chorea treatment currently marketed by the pharmaceutical company Lundbeck under the name Xenazine. If SD-809 works as intended, it will require fewer dosages and produce fewer side effects than tetrabenazine.

However, tetrabenazine does not affect the root causes of HD, nor is SD-809 expected to.

Auspex seeks to use SD-809 as a platform to research and develop drugs that would attack those causes.

Dr. Shah and I agreed to schedule soon an interview so that I can write an in-depth article on Auspex’s efforts.

I told Dr. Shah about a middle-aged, HD-afflicted man I had met who had maintained much of his cognitive abilities but suffered from strong chorea. However, tetrabenazine controlled the chorea, enabling him to keep driving, something most HD patients have to give up.

Tetrabenazine’s approval by the Food and Drug Administration had come too late to benefit my mother, who died of HD in 2006. I told Dr. Shah that she had taken another medication to control her chorea, which was relatively mild, although she had initially had strong chorea in her legs at night. In general, chorea was the least of my mother’s problems with HD, which devastated her cognitive abilities and caused serious psychiatric difficulties.

I also related my recent conversation with a former HD support group colleague who has had symptoms for a number of years.

Speaking to a symptomatic individual, I pointed out, provides me a terrifying glimpse of my own future.

A powerful HD dream

As I processed these latest events in my journey with HD, my unconscious mind produced a powerful dream.

I awoke from the dream at 5 o’clock on Sunday morning. Afraid that I would forget its content, I went to my home office to type out the details on my computer, and to outline this article.

In the dream, where I am meeting with other asymptomatic HD gene carriers, I encountered the same HD-affected man whom I had mentioned to Dr. Shah.

The people in our dreams often represent aspects of ourselves. In my interpretation, thinking of a symptomatic man in the context of a group for the asymptomatic meant that I was wrestling with the inevitable reality of my onset.

Tapping into the soul

As the dream continues, I fly to New York City on HD advocacy business.

In my hotel room, I start to write a blog article describing the recent HD-related aspects of my life. I have my trusty laptop with me but am oblivious to it. Instead, I write in longhand on a white legal pad. It’s the way I sometimes wrote in college or now write on airplanes or when I’m revising a draft I’ve printed out.

There’s something pure and primal about this form of writing. It’s the way I first learned to write. I’m crossing things out, jotting down ideas, and flipping back and forth through the pages to read and make adjustments. At one point I think that, because I don’t have much time before my evening HD meetings, I’ll switch to the computer. But I want to first eke out some more lines on the pad.

The dream was compelling me to practice the craft I have enjoyed since childhood, to tap into the soul that defines me.

I later recalled the photograph that an HD-affected man posted of himself illustrating his superb kickboxing skills before the disease struck. He wanted to remember himself at the height of his powers.

The dream, I think, reflected my fear that HD will rob me of my writing skills.

A metaphor for facing HD

Later in the dream, I go to a restaurant along with two other asymptomatic gene carriers and my friend, blog editor, and HD alter ego, Norman. One of the gene carriers, I recognize, is the symptomatic man I’d encountered earlier in the dream, only transformed into a healthy individual. On the way there, I give each gene-positive man a bear hug. I feel deep brotherly love towards these men.

A native New Yorker, Norman describes the restaurant as a very different and unique place. He says it’s called Pub Med.

We seem to be on the Upper West Side of Manhattan. Evening is approaching.

The restaurant is made of recently hewn, unpainted pieces of wood, which are also used as furniture: benches and small, round tables. It’s outdoors, located in the middle of a square where I can hear kids playing on swings and moms walking their kids. There are small stores on the edges of the square, too.

But there’s something very strange: the benches and tables are stacked on top of one another in a pyramid-like fashion. They rise about 30 feet. We climb up and look for a place to sit. Norman is sitting with the first gene-positive person while, at another table, the second gene carrier continues to explain to me the nature of this restaurant-structure and how to sit on it without falling.

I'm still standing. However, as I try to sit down, some of the tables and benches near me shift down or fall off suddenly and unpredictably. I’m afraid that I’ll fall off. The second gene carrier seems to know well how to deal with it. He’s experienced and seems to take it all in stride.

As I strive to keep my balance on the structure, I gaze at a different kind of Manhattan skyline. On the horizon, I see some burning buildings. Referring to the restaurant-structure and the buildings ablaze in the distance, I tell the second gene carrier: “I can think of no better metaphor to describe living at risk for Huntington’s disease.”

Building hope, pondering onset

The dream, I think, represented my fight to continue advocating for the HD cause.

Manhattan is headquarters for three key HD organizations: the CHDI Foundation, Inc., the Hereditary Disease Foundation, and the Huntington’s Disease Society of America. Along with other organizations and scientists around the world, they hold the key to finding treatments.

Norman has taken my family and me on a walking tour of Manhattan. He urged me to start this blog. In both the dream and real life, he has acted as a kind of guardian angel in my fight against HD. I believe that the Norman of the dream also symbolizes my own internal editor, who, like the real-life Norman, the author of a richly detailed and public-spirited watchdog blog on Brooklyn's Atlantic Yards project, strives to produce in-depth and understandable reports.

Along those lines, I had told Dr. Shah I would read scientific articles about SD-809 before our planned interview. I believe that the Pub Med restaurant represents my desire to prepare thoroughly for an interview regarding the potentially life-saving work done at Auspex. In reality, PubMed, a well-known research tool, has more than 23 million citations from biomedical literature, life science journals, and online books.

I explained to Dr. Shah that in this blog I seek to provide the HD community with information about potential treatments, breakthroughs, and challenges.

My goal is to provide the community with hope, and advocate for change.

The dream, I believe, also reflected my continued striving for internal equilibrium as I ponder the kind of onset I will experience.

Will I falter like an HD person who can no longer control movements and mind? Will I continue to work and drive? Will I be able to help support my daughter as she studies in college? Will effective treatments arrive in time to at least reduce the severity of symptoms – and prolong my life?

These are the inescapable questions of my reality as a Huntington’s disease gene carrier.

Reaching out to the ‘HD family’ at the World Congress on Huntington’s Disease

As I returned on the plane from Brazil and the sixth World Congress on Huntington’s Disease, held September 15-18 in Rio de Janeiro, I was thrilled about my fortified connections to the emerging global movement to defeat HD.

I greatly expanded my contacts within the Brazilian HD community, which had the largest representation of HD family members, with more than 60 attendees.

After months of frequent contact via e-mail, phone, and Skype, I was delighted to meet in person Taíse Cadore, the president of the Associação Brasil Huntington (ABH), and neurologist Francisco Cardoso, M.D., Ph.D., two key organizers of the event. Along with Dr. Mônica Santoro Haddad, Cadore, Cardoso, and I have worked to raise the profile of HD in Brazil and to involve the government in improving the care provided to patients.

ABH volunteers helped put on the congress, staffed an information table, and attended many of the scientific and HD-family-oriented activities. Along with the organizing committee and many other Brazilians contributing to the event, the ABH volunteers made the congress a success.

In the coming days, I will prepare a comprehensive report on the congress, including a video of my presentation on coping strategies for living with the HD gene, plus many of the other presentations.

Taíse Cadore (photo by Gene Veritas)

Gene Veritas with (from left to right) ABH volunteers Carmen Faccio, Maria Eni Souza, Carmen Varalta, Majida, and Tereza Portigliotti and Zulay Final Romero of the Venezuelan HD association. The t-shirts say "embrace this cause." 

Cramming in activities

For now, I am focusing on the transition from the cultural environment of Brazil – my “other home” – back to my life in San Diego.

International journeys require intense, detailed preparation. This one proved especially demanding.

After a 25-year stretch in which I visited Brazil annually, including long periods living there, I declined to travel there in 2011 and 2012. Those years my time was taken up by my increasingly public HD advocacy and my added focus on the history of science, technology, and medicine in the context of the Huntington’s movement. The trip felt like a whirlwind: it included the congress, four presentations, other Brazil-related research, and visits with relatives and friends crammed into just ten days.

It didn’t help matters that my connection to Rio was delayed some 13 hours, obliging me to spend the early morning of September 13 sleeping on a cot in the Dallas-Fort Worth airport. The trip to Rio wound up taking 30 hours!

A life-affirming quest

This was not just another of my expeditions to Brazil.

Once again, I was on a mission to help defeat Huntington’s disease, the condition that, unless a treatment comes soon, will relentlessly attack my brain. In addition to helping with advocacy in Brazil and planning a bit of the congress, I spent more than 30 hours preparing the speeches I would deliver in Brazil.

The day before I left the U.S., I gave a 90-minute Skype interview to journalist Marcelo Leite, who published an article in the Folha de S. Paulo titled “‘It’s necessary to pass laws against genetic discrimination,’ says historian.”

The ABH circulated copies of the article at the congress. A radio reporter who had seen the article interviewed me and others. Senator Aloysio Nunes Ferreira, one of three senators representing the state of São Paulo, Brazil’s most populous and economically powerful state, wrote me a personal e-mail pledging to push for passage of such legislation in Brazil’s Congresso Nacional.

I felt a deeply visceral satisfaction meeting with so many of the HD movement’s advocates. It was emotionally wrenching to see people with HD and hear the affected, gene carriers, at-risk, and caregivers tell their stories.

Hugging my fellow “HD family” members from far-off lands or shaking their hands joined us in a lifelong, life-affirming quest.

Gene Veritas with actress and ABH volunteer Luiza Portigliotti 

Gene Veritas with Carlos and Eliezé Adriani of Campinas, Brazil

Stark challenges, seeking advice

One woman, a middle-aged dentist from Rio in the early stages of HD but still completely lucid, wanted to know about supplements and other remedies that I take.

The mother of Priscila, a 31-year-old Rio woman with pronounced chorea, the involuntary, dance-like movements produced by HD, asked how she might get her daughter into a clinical trial for the HD “vaccine” they heard was in development in California. The newspaper O Estado de S. Paulo featured Priscila and her family in an article about the world congress and HD.

Priscila's mom was referring to the gene-silencing approach at Carlsbad-headquartered Isis Pharmaceuticals, Inc., which, along with pharmaceutical giant Roche, hopes to start Phase I of the trial by the end of 2014. I explained that Isis and Roche had not yet announced the trial sites and suggested that she and her family should keep abreast of news on the project.

Others shared with me their stories of testing positive for the gene, the stark challenges of family planning, and learning that a potential future mate is at risk.

Priscila, a 31-year old Rio resident who suffers from HD (photo courtesy of O Estado de S. Paulo)

Priscila on the beach in Rio (photo courtesy of O Estado de S. Paulo)

In sync with the movement

During this trip, I reached many milestones.

I felt fully in sync with the HD movement, its values, and its supporters, as I took 13 congress participants and leading HD researchers to my favorite Rio steakhouse and bar; for the first time met Nancy Wexler, the dean of HD scientists; and delivered my speech on HD and bioethics and engaging with the emotion-charged audience at a college in São Paulo on September 21.

As waiter serves steak, Gene Veritas (right) converses with HD specialist Dr. Ed Wild, global HD advocate Charles Sabine, and HD drug-hunter Dr. Doug Macdonald at Café Lamas in Rio de Janeiro (photo by Alice Wexler).

I felt vindicated in my decision to go fully public about HD late last year and meld my professional and personal lives with my advocacy.

I smiled and got a warm feeling inside as I spoke of this big transition in my life with a long-time Brazilian friend and professional colleague.

As she observed, I was doing the right thing.

Gene Veritas (aka Kenneth P. Serbin) in Rio (photo by Tim Power)

Heading to Rio for the 2013 World Congress on Huntington’s Disease

Today I will travel to Brazil, my other home, to participate in the critical 2013 World Congress on Huntington’s Disease at the Sheraton Rio Hotel and Resort in Rio de Janeiro.

Approximately 430 scientists, physicians, advocates, and family members are expected to attend the congress, which runs from September 15-18.

The congress will feature presentations on the efforts towards treatments, basic research, clinical features of the disease, genetics and genetic testing, patient and family perspectives on the disease, and other HD-related themes. The event includes meetings of the International Huntington’s Association and other HD organizations.

Along with other international specialists and advocates, I will speak in a session on “Coping” on September 16. (The presentations will be in English, the official language of the congress.)

The congress will also help support the recently inaugurated Enroll-HD, an international study of HD patients, at-risk individuals, and their families. Enroll-HD aims to increase knowledge of the disease and the pool of participants for research studies and clinical trials, which are crucial for developing tests and treatments.

The sixth world congress since the inception of the event in Toronto in 2003, this first-ever gathering of this magnitude in Latin America will draw increased attention to Enroll in the region and especially Brazil. With over 190 million people, the world’s fifth largest population, Brazil could add potentially hundreds, if not thousands, of participants to Enroll-HD.

Click here to read a previous article on Brazil’s significant place on the HD map.

Brazil’s federal government has also taken notice of the HD cause. Local advocates and Brazilian health ministry officials have started a dialogue on the need to train doctors and other health professionals how to recognize the frequently misdiagnosed symptoms of HD and refer patients to specialized clinics.

A bi-cultural life

I have researched Brazilian history since 1986 and ever since have traveled there almost annually. In all, I have spent about eight years in Brazil. My wife Regina is from Brazil, and our teen daughter Bianca is close to her Brazilian grandma and aunts and uncles.

I have become a bi-cultural individual. I feel very much at home in Rio, where Regina and I met during my three years of Ph.D. research from 1988-1991, and the numerous other regions of Brazil I have visited.

Gene Veritas (aka Kenneth Serbin) conducting research at the Memorial of Resistance to the Brazilian dictatorship in 2009 (photo by Marcelo Ulisses Machado)

On the day before the congress begins, I will attend the 80th birthday party of minha mãe brasleira, “my Brazilian mom,” Maryse Bacellar, whom I met in 1988 while spending a couple months in her home during an intensive Portuguese-language program.

From virtually the start of my family’s difficult odyssey with HD after my mother’s diagnosis in 1995, Maryse has always lent an understanding ear.

As my biological mother Carol Serbin withered away under the barrage of HD symptoms, dying of the disease in 2006, Maryse occupied an increasingly important place in my life. After my mom lost the ability to speak, Maryse became the virtual mom I could talk to.

In my free moments, I’ll also get to spend time with my mother-in-law and other relatives and close friends.

Over the years, I have forged deep bonds with many other Brazilian friends. After I exited the terrible and lonely “HD closet” last year with an article in The Chronicle of Higher Education and then in Portuguese in the Folha de S.Paulo, those friends sent warm greetings of solidarity.

Along the way, I have witnessed the development of the Associação Brasil Huntington and built ties to its leaders.

HD and bioethics

After the congress, I will travel to São Paulo, one of the world’s leading industrial and financial hubs, to deliver a speech in Portuguese on “Huntington’s Disease and Bioethics: A Case Study.”

The event will take place at 10 a.m. on September 21 at Centro Universitário São Camilo’s graduate program in bio-ethics, located at the university’s Campus Pompeia 1, Rua Raul Pompeio, 144.

The day before I am also scheduled to appear before the truth commission of the São Paulo state legislature, one of many such commissions in Brazil currently investigating the atrocities of the military dictatorship that ruled the country from 1964-1981. I have written several books and a number of articles examining that period.

A huge milestone

As I increasingly turn my scholarly attention to the fight to interpret the quest to defeat HD and contribute to its success, this trip represents a huge personal milestone.

For the first time, I will completely meld my vast experience in Brazil with my HD advocacy.

I am ever thankful for the great commitment of my Brazilian brothers and sisters to the HD cause. I look forward to one day celebrating with them the defeat of HD.

Advocacy meets science and medicine: personal enrichment and a coping mechanism for Huntington’s disease

In my effort to delay the inevitable onset of Huntington’s disease, I have strived to protect and nurture my brain through physical exercise and the practice of “neurobics,” a simple way of cross-training the brain that goes beyond common methods such as crossword puzzles and memory games. I described this approach in detail in an October 2011 article.

“Neurobics uses an approach based on how the brain works, not simply on how to work the brain,” wrote the late neuroscientist Lawrence C. Katz, Ph.D., and writer Manning Rubin in their book Keep Your Brain Alive: 83 Neurobic Exercises to Help Prevent Memory Loss and Increase Mental Fitness.

Scientists have established that neurobics increases levels of BDNF (brain-derived neurotrophic factor), a key “fertilizer” for the brain. Mice genetically modified to mimic HD symptoms severely lack BDNF.

As HD researcher Moses Chao, Ph.D., has observed, humans can increase their BDNF levels “through increased exercise or any other kind of novel activity (travel, learning a new language, etc.).”

Thus, neurobic exercises seek to stimulate the less-used parts of the brain. For example, a person can brush his or her teeth with the opposite hand, thus stimulating the hemisphere of the brain opposite that's normally used.

“I have learned that I must focus not only on the quantity of exercise, but its quality,” I concluded. “I need to stop frantically overstimulating my brain and instead concentrate on exercise, Neurobics, and other activities that will increase my BDNF.”

From Brazil to the history of science

Without at first realizing it, I had developed a novel, personal way of stimulating my brain.

Ever since delving into my Ph.D. research in the mid-1980s, I have focused my intellectual career on modern Brazilian history.

After learning of my mother’s positive test for HD and my own at-risk status in late 1995, I began to get involved in a radically different second field – one encompassing science, technology, and medicine – as an advocate for treatments to save my family and others from the ravages of HD. I redoubled this effort after I tested positive for HD in 1999.

In my free time, I read everything I could about HD science and research.

From 2001-2007, I wrote, edited, and produced a tri-annual newsletter for the San Diego Chapter of the Huntington’s Disease Society of America – including detailed articles on breakthroughs and a regular research update surveying the HD science and related fields. I advocated for the adoption of HD stem cell research projects by California’s stem cell institute. Since 2005, in this blog I have reported in detail on research meetings and many of the major projects seeking therapies.

Since my definitive exit from the “HD closet” last November, I have become involved in the national History of Science Society and linked to new initiatives at the University of San Diego in neuroscience and medical ethics.

This endeavor has enriched me intellectually and personally. Although I cannot prove it scientifically, I believe it has helped delay onset. At 53, I am now at least several years beyond the age of my mother’s apparent initial symptoms.

Connecting with the researchers

As Katz and Rubin point out, neurobics can and should include maintaining a rewarding emotional life based on intimate connections to people.

More than ever, I have focused on strengthening the bonds of love with my friends and family.

I have also built emotionally powerful connections with the scientists, physicians, nurses, research assistants, and support personnel involved in the quest for treatments.

Jane Paulsen, Ph.D., the co-director of the HDSA Center of Excellence at the University of Iowa, with Gene Veritas (photo by Sarah Petitt)

I reflected on these feelings in a speech I gave during a trip last month to the University of Iowa to take part in a key HD research study. The audience included doctors, medical students, social workers, HD researchers, and other staff from health related fields.

I titled my presentation “Advocacy Meets Science and Medicine: A Huntington’s Disease Activist’s Quest.”

After relating my family’s struggles and my work as an advocate, I described how my connections to researchers have served as a powerful coping mechanism.

Gene Veritas with Beverly Davidson, Ph.D., in the Davidson Laboratory at the University of Iowa (photo by Sarah Petitt)

As the holder of a doctorate, I said, I have an excellent understanding of the intellectual rigor involved in research and of the role of physicians and scientists in producing knowledge and solving problems.

I strongly identify with the researchers and deeply appreciate their contributions, I observed.

By exploring their work, I gain a sense of usefulness and participation in the cause. It allows me to combat  feeling powerless in the face of a disease that cruelly strips people of their humanity and relentlessly leads to death – without treatment or cure.

Dinner with the researchers: from left to right, Courtney Shadrick, research assistant; Dr. Jane Paulsen; Isabella De Soriano, research assistant; Owen Wade, administrative services coordinator; Jolene Luther, undergraduate research fellow; Sean Thompson, public relations coordinator; Dr. Jeffrey Long, Professor of Psychiatry and Biostatistics; and Gene Veritas.

Global teamwork

“I feel very humbled, I feel very empowered, and I feel a great sense of hope, because these are the people who are holding the keys to my very survival,” I declared in my presentation.

Ultimately, patients and researchers work together as a team, I said.

“I think that together we’re building a future in a way that supports the patients and their families and seeks to build a better and healthier life for all of humanity,” I concluded. “It’s not just about Huntington’s disease. It’s about all of the other conditions out there…. As a research community in America, as a nation, as a global community we need to work together, and that’s why I’m going to the World Congress on Huntington’s Disease … in September.”

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

Doing our utmost

Seeing the larger purpose in our fight has heartened me as I prepare to travel to Brazil for the World Congress.

In my conference presentation on coping with a gene-positive status, I will stress how it’s vital for affected families to educate themselves about the research as a basis for their own advocacy – and for hope.

At the very least, in connecting with – and assisting – the researchers, we can assure ourselves that we have done the utmost to help defeat HD.