Huntington’s disease patients ‘feel better’ after taking Auspex compound to control chorea in clinical trial

Huntington’s disease patients in a recently concluded clinical trial for a potential new drug to control the disease’s characteristic involuntary movements reported that they “felt better” overall.

The trial showed that the compound reduced chorea substantially and with fewer and milder side effects than a predecessor drug, a significant step, although it does not address the cognitive and psychiatric symptoms of HD nor attempts to be a “cure.”

Auspex Pharmaceuticals, a San Diego biotech firm focusing on hyperkinetic movement disorders and other rare diseases, announced the highly favorable results for the Phase III clinical trial for its substance SD-809 on December 16, 2014.

Like Xenazine, the first ever drug approved by the federal Food and Drug Administration (FDA) for Huntington’s, SD-809 attacks chorea, the involuntary, sometimes dance-like movements caused by HD’s devastation of the brain.

As one of its “endpoints” (research targets), Auspex used the Patients’ Global Impression of Change scale to measure whether patients actually felt better. The patients’ responses showed convincingly that they did, in part as a result of controlling chorea.

“I don’t think that there’s ever been a therapy with patients with HD that has actually demonstrated that patients actually feel better on this type of patient assessment,” Pratik Shah, Ph.D., the Auspex president and CEO, said in an interview at Auspex headquarters on December 23.

“This is something that in the past not everyone has been able to appreciate: the impact of chorea on the life of a patient. We wanted to put in an instrument that really asked the question: ‘Does this matter to the patient? Do you feel better?’ Given the fact that perhaps not everyone outside the HD community really understands the adverse impact of chorea on the life of a patient and their family, this was an important question to assess.”

The trial doctors were asked a similar set of questions about the trial participants. “The clinicians as well saw a favorable result here,” Dr. Shah said.

As a carrier of the HD gene mutation who lost his mother to HD nine years ago this month, I was thrilled to hear the news about SD-809 and to visit Auspex for the second time in recent months. You can watch my reaction in the video below.

Reducing chorea and side effects

Significantly, the clinical trial demonstrated that SD-809 reduced chorea substantially.

“We saw a 37 percentage-point improvement in the SD-809 arm and 16-percent improvement in the placebo arm, so it’s 21 percentage points above placebo,” Dr. Shah said. “This is very robust, when you look at all the historical data [from the Xenazine trial].”

Dr. Shah pointed out that the data are the sum of all the observations made on and by the participants.

“One person can have a two- or three-point reduction and experience great benefit, while a different individual may have the need for a greater numerical reduction,” he said.

According to one analyst who compared the two compounds, the reduction in chorea is about the same seen in the Xenazine trial.

However, SD-809 had fewer and far milder side effects than Xenazine. Both are taken as a pill. Neither attacks the root causes of HD, nor the psychiatric and cognitive symptoms that devastate most HD patients. So such drugs are not a “cure.”

Referring to the study data, cited in a press release on the Auspex website, Dr. Shah affirmed that SD-809 caused low levels of side effects such as depression, restlessness, anxiety, insomnia, sleepiness, irritability, and fatigue. SD-809 caused no problems with swallowing in any of the patients –  2.2% of those trial participants on placebo did experience difficulty with swallowing.

The minimal level of those side effects is important in HD, because the disease itself often causes such symptoms, in particular depression, which appeared to be lower in the SD-809 arm compared to placebo, Dr. Shah noted.

Pratik Shah, Ph.D. (photo by Gene Veritas)

In an assessment of the total motor (movement) score of the standard HD disease rating scale, SD-809 led to improvement – an outcome lacking in the Xenazine trial, Dr. Shah pointed out.

The improvement in this score suggests that movement problems other than chorea could be improving, he added.

Yet another trial measurement showed that participants’ “physical functioning” improved with SD-809, that is, movement required to do daily tasks such as walking and climbing stairs.

SD-809 as seen by HD experts

Ninety individuals took part in the Phase III trial, called First-HD, at 34 sites across the U.S. and Canada. Half received SD-809, half a placebo. All participants had at least moderate chorea. The study was double-blinded: neither doctors nor participants knew who was receiving the drug. This is the most rigorous form of clinical trial. Auspex ran the trial in conjunction with the Huntington Study Group (HSG).

None of the First-HD participants was taking Xenazine at the time of the trial. Auspex and the HSG also conducted a trial known as ARC-HD to study another group of participants already taking Xenazine but who switched the next day to SD-809 for the trial. ARC-HD demonstrated that the switch between drugs did not affect the reduction in chorea and occurred with no serious side effects. In fact, patients shifting to SD-809 had somewhat less chorea, and at smaller dosages, Dr. Shah noted.

“New, safe and tolerable therapies for chorea treatment are clearly needed to make this disease an increasingly treatable condition,” said Samuel A. Frank, M.D., an HSG researcher and principal investigator for First-HD, in the Auspex press release. “The primary and secondary efficacy results from this study were confirmed by the Huntington Study Group independent analysis. These clear and unequivocal results are clinically meaningful and suggest that SD-809 may play an important role in the treatment of Huntington's disease symptoms.”

Dr. LaVonne Goodman, the founder of the Huntington’s Disease Drug Works program and a clinician who has attended to scores of HD patients, echoed the optimistic conclusions about SD-809’s efficacy.

“This drug treats chorea with many fewer side effects associated with tetrabenazine [Xenazine],” she wrote. “And most important it improved quality of life.[…] If this drug lives up to the press release, it could/should replace antipsychotic drugs as primary treatment of chorea in Huntington's disease.”

Although not yet convinced that SD-809 is better than Xenazine overall, the researcher-written website HDBuzz.net affirmed in a generally positive article that the “very well-run” Auspex trials “prove that SD-809 could be a useful new tool to help fight excessive movements in Huntington’s disease.”

How it works

Xenazine’s scientific name is tetrabenazine, a drug discovered in the 1950s. HD-affected individuals used tetrabenazine for decades in Europe and Canada, where U.S. families purchased the drug on an individual basis in person or through mail order. Only in 2008 did it receive FDA approval.

Chemically SD-809 is an improvement on Xenazine. It is deutetrabenazine: a molecule with atoms of deuterium (heavy hydrogen) attached.

“We used in select places deuterium as a building block,” Dr. Shah explained, pointing to a model of SD-809 made by an Auspex scientist.

Dr. Shah explains the structure of SD-809 using a model built by an Auspex scientist. The colors represent the compound’s five atoms: carbon (black), hydrogen (white), oxygen (red), nitrogen (blue), and deuterium (green). In scientific terms, SD-809 (deutetrabenazine) is a VMAT2 inhibitor. (photo by Gene Veritas)

Very much like Xenazine, SD-809 inhibits certain chemical actions in the brain in order to avoid such symptoms as excess dopamine, which can lead to the involuntary movements of HD, Dr. Shah explained.

He added that the addition of deuterium “enabled this molecule to be broken down in the body more slowly and so it sticks around longer.” As a result, the levels of the drug in the bloodstream become “smoother.”

For patients, this means smaller, less frequent dosages and potentially a more optimal performance of the drug, he said.

Applying to the FDA

After the conclusion of First-HD and ARC-HD, over 90 percent of the trial participants (excluding a few who dropped out) entered a follow-up study so that Auspex can further analyze the effectiveness of SD-809 and the compound’s side effects. This ongoing study gives participants access to the compound, including those who were receiving the placebo during the trial.

On January 12, Auspex released additional good news resulting from its ongoing analysis of SD-809: whereas Xenazine’s instructions warn about the possibility of an abnormal, prolonged heartbeat, SD-809 does not cause such a symptom to the point of medical concern.

Dr. Shah stated that Auspex hopes to complete a New Drug Application for HD and SD-809 during the first half of this year. Review of such applications typically takes from six to twelve months, depending on the circumstances.

“We have a huge sense of urgency, especially given these [clinical trial] results, to do everything we can to put the application together as soon as we possibly can,” Dr. Shah emphasized.

Auspex has also submitted for FDA approval a list of possibilities for SD-809’s eventual commercial name.

On January 14, Auspex received orphan drug designation from the FDA for use of SD-809 in Tourette syndrome, another rare movement disorder. The company is currently conducting a Tourette clinical trial.

Last year, Auspex received the same designation for HD. Orphan drug status – for conditions affecting fewer than 200,000 people in the U.S. – provides special incentives for companies to produce drugs for these maladies.

Awaiting a price and revenues

Dr. Shah said that the company has not yet researched the price of the drug.

The exorbitant cost of some orphan drugs has caused deep concern among affected families and patient advocates. Lundbeck, which markets Xenazine, has a program to assist HD families with the high cost of its drug, which can reach $50,000 at the wholesale level for an annual supply (click here to read my previous article on the cost of orphan drugs).

“We remain committed as a company to making SD-809 available to those who need it as much as we can,” Dr. Shah commented.

As a young company that only sold stock publicly for the first time in 2014, Auspex has yet to generate revenues. Investors continue to support the company as it moves forward with clinical trials and new research, Dr. Shah explained.

Xenazine will lose its market exclusivity in August 2015 and become subject to generic competition. This development could put additional pressure on Auspex to market its drug affordably, but, at the same time, furnish the opportunity to stress its compound’s greater safety.

New hope and a platform for future research

“We haven’t had a positive study in HD in many, many years, so it’s really an opportunity to celebrate a success that we’ve seen here and to recognize that this is an important step forward for the field and to kind of spread some good cheer and to have renewed hope for the field,” Dr. Shah concluded about the SD-809 trial. “It is also important for the community to remind the people who don’t know treating chorea does matter. It can affect and does affect people’s quality of life.”

Auspex hopes to use the SD-809 project as a platform for researching possible treatments that attack the causes of HD, Dr. Shah said.

“We’re always on the lookout for what makes sense to invest in there,” he added.

The success of the drug and its acceptance by HD families and clinicians could help provide the revenues needed to fund the new research into better remedies, he said.

Dr. Shah (left) with Gene Veritas (photo by Rachel Kenny, Auspex)

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.

Reshaping my career and life in the face of Huntington’s disease (and a note of hope)

In the second half of the 1990s, after learning of my mother’s diagnosis for Huntington’s disease, the 50-50 chance of having the genetic mutation unsettled me greatly. One way I dealt this was to throw myself into my career.

The fear that I would follow in my mother’s footsteps and lose my ability to work frequently caused me to panic. I was just 36, but the future seemed bleak because I witnessed in my mother and other HD patients the terrible devastation of the disease. She was declining rapidly. I thought my own decline could occur at any time and was convinced that, at best, I wouldn’t get very far into my 40s before HD hit.

Striving to achieve the academic milestone of my first book – the gold standard for recognition for professional historians – I sometimes wrote as many as 14 hours per day.

The quest for success – I was already thinking about my professional legacy – served as a powerful form of denial.

Family first

During that now seemingly crazy but certainly understandable response, I often neglected my relationship with Regina, my wife. Regina had stood by my side throughout our ordeals with HD, but the long hours I worked meant fewer hours to grow with her in the marriage.

After my initial impulse to get tested for HD right after my mother’s diagnosis in late 1995, I had sensibly postponed testing to gather information about the disease and avoid the risk of genetic discrimination. Regina agreed that we should delay starting a family until we sorted out all the issues HD presented for conceiving and raising children.

However, after a few years of waiting, and approaching her mid-30s, Regina wanted a child badly.

My decision to get tested in 1999 to prepare for having a family, my subsequent positive test result, our daughter Bianca’s negative result in the womb, and her birth the following year grounded me again in the basics of life and sealed my commitment to my family.

As Bianca grew, my mother headed towards death.

Soon, rather than working overtime on professional  issues, I stepped up my HD advocacy, although always behind the scenes because of the enduring fear of genetic discrimination.

I still spent much time away from Regina and Bianca, yet I also learned to manage my week more efficiently. I reserved special moments for them, especially on the weekends.

Raising Bianca along with Regina and watching her grow into a teenager have brought me great pride and joy. There is no more important task for parents.

Although no life is risk-free, we are profoundly relieved and grateful that she will never have HD.

In my work as chair of the history department at the University of San Diego (USD), I always say “family first” to co-workers needing time off to attend to critical matters such as an ill child.

A clear purpose

In the 18 months since I exited the “HD closet” and announced the adoption of a second academic field, I’m once again reshaping my career.

I’ve reflected deeply on what professional ambition means for me. Whereas career was once top priority, today I think a lot more about human solidarity.

At home, this means keeping the focus on family. In the academic venue, it’s about viewing career as a service to students, the profession, and society. In HD advocacy, it’s a collaborative effort to speed up the discovery of treatments to save tens of thousands of people like me from the disease.

My shift in attitude results partially from my experience as a parent and the perspective on life maturity provides.

However, the fight against HD also plays a very significant role.

I especially comprehend the importance of HD when I attend conferences such as last February’s Ninth HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc.

With hundreds of participants focused on the single goal of defeating HD, the feeling in the room was electric – indeed, almost surreal. The atmosphere was so intense and the connections among the participants so strong that I felt as if I were communicating telepathically with some of them.

Similarly, learning that yet another person has died from HD or juvenile HD strikes me in the pit of the stomach and redoubles my sense of urgency as an advocate.

My academic career began as a search for professional and personal fulfillment fueled with a passion for Latin America and its history. My investigation into the history of science, technology, and medicine – which includes my HD advocacy and, in this blog, an ongoing, firsthand account of living at risk – transcends the professional and the personal. It builds awareness about the global, cutting-edge efforts to improve brain health.

In short, I now have a clear purpose.

Melding career and activism

My reshaped career melds my professional training with my advocacy work. As I wrote recently, at work I raised concerns about the long-term effects of head injuries suffered by college football players.

On April 3, I attended a USD-sponsored panel discussion on ethics and genetic testing, with a focus on the direct-to-consumer genetic testing service 23 and Me. Last November the federal Food and Drug Administration ordered the company to stop selling its saliva connection kit and genome service because the agency said it had failed to demonstrate the tests’ accuracy. I made an audio recording of the USD event and took photos of the participants, who included fellow faculty members as well as two deans. I plan to report on the event in this blog. This is the first time that I have covered a USD event as an HD blogger.

During the 2014-2015 academic year, I will be on sabbatical, that is, freed from teaching and administrative duties to focus exclusively on research and related projects. During that period I plan to work on a long-gestating book on former Brazilian revolutionaries who have come to positions of power. I also aim to continue my HD advocacy, and I will prepare a new course tentatively titled “A History of the Brain,” a subject not being taught in our History department nor in any science department.

I hope that course, to be taught after I return from leave, will inspire students to become historians and to build awareness of the centrality of the brain in our lives, as well as produce more humanistic, historically-oriented science majors.

In general, I feel a growing desire to help guide young people – surely a function of being a father of a teenager and a veteran professor, but also of my solidarity work in the HD movement.

Riding a whipsaw, but content

On April 10, I flew to Providence, RI, to take part in a conference at Brown University marking the 50^th anniversary of the U.S.-supported Brazilian military overthrow of the democratically elected President João Goulart.

This was the first meeting related to Brazilian studies I had attended in more than four years. The long hiatus was caused by my growing interest in the history of science, technology, and medicine.

It was also the first time I took part in a Brazilian studies event where people knew about my HD status. I received words of encouragement from several colleagues, including some who have made donations to the cause. I felt very much at ease, and I was thrilled to feel some of my old passion for Brazil return and to catch up with my colleagues.

I also brought to the conference a much sharper mental focus, obtained thanks to my participation in events such as the HD Therapeutics conferences, which, because they represent completely new and highly complex material about a life-or-death matter, require enormous concentration, energy, and openness to different perspectives.

By sheer coincidence, on April 12 the Rhode Island chapter of the Huntington’s Disease Society of America (HDSA) held its inaugural family education day at Butler Hospital, also in Providence. I took part, giving a presentation titled "Opportunities for HD Advocacy."

You can watch my presentation in the video below. For other presentations from the education day, click here to visit my Vimeo video album of the event. (I'll be adding additional presentations from the event in the next few days, so be sure to refer to the album again.)

Opportunities for Huntington's Disease Advocacy: A Presentation by Gene Veritas at Butler Hospital from Gene Veritas on Vimeo.

Immediately after the family education event I got a ride to the airport with Connecticut HD activist Laura Kokoska, who updated me on her HD-stricken mother, who is 71, and her own advocacy activities.

On the morning of April 13, I led the Serbin Family Team in the third annual Team Hope Walk of HDSA-San Diego.

Flying coast-to-coast twice in less than 72 hours (with connections in Chicago), jumping from one event to another in Providence, presenting talks on both Brazilian history and HD advocacy, arising early on the 13^th for the Hope Walk – it all felt like riding on a whipsaw.

No matter! I was excited to thrive and make yet wider and deeper connections in both spheres of my career.

As I've learned, my life must not serve my career, but my career my life.

A successful Hope Walk

The Hope Walk was a success, raising approximately the San Diego chapter goal of $44,000. Lead corporate sponsor Auspex Pharmaceuticals, a San Diego-based company conducting HD research, donated $10,000 to the event. Other major corporate donors included pharmaceutical firms Vertex and Lundbeck, both of which also have an HD focus.

For the second straight year, the Serbin Family Team was the top team fundraiser, with a total of more than $4,600. I wish to thank the 44 donors (individuals, couples, and families) who gave to the cause, as well as the team members who walked with us at Tidewater Park in Coronado, CA.

As in past years, the support of HD-focused firms and the participation of more than 300 people, including some of the scientists seeking treatments, lifted my spirits.

You can view the Serbin Family Team and other scenes from the Hope Walk in the photos below.

The Serbin Family Team of the 2014 HDSA-San Diego Team Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Yi Sun, Kenneth Serbin, Regina Serbin, Allan Rappoport (photo by Bob Walker)

Gene Veritas (aka Kenneth Serbin) presents 16-year-old juvenile HD patient Terry Leach with the iPad mini won by the Serbin Family Team for being the top Hope Walk team fundraiser (photo by Misty Oto).

HDSA-San Diego President George Essig addresses the crowd just before the Hope Walk begins (photo by Gene Veritas).

Hope Walk co-organizer Misty Oto addresses the crowd alongside Christian Rodriguez (left) and Terry Lopez, organizer of a Poway High School student group established last year to support the local HD community (photo by Gene Veritas).

Tim Schroeder (left), Gene Veritas, and HD support group facilitator Sandy Grofcsik

Walk participants LaVonne and Paul Cashman (left) and Jim Stone (photo by Gene Veritas)

Hope Walk participants await the start of the event (photo by Gene Veritas).