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.