In Harriet’s tragic death, the vulnerability caused by Huntington’s disease – but also the story of a beautiful soul

On the morning of April 8, while out for her cherished daily walk, 71-year-old Huntington’s disease patient Harriet Hartl died tragically after being struck by an Amtrak train at a pedestrian crossing near her apartment in Del Mar, CA, in San Diego County.

The story of Harriet’s death encapsulates the fear of all Huntington’s families – indeed, the family of any individual suffering from diseases that hamper perceptions and mobility. HD, Alzheimer’s, Parkinson’s, and other such disorders make people extremely vulnerable to the world.

Harriet’s passing further highlights the need to find effective treatments for these conditions, which scientists have found especially difficult to fathom.

However, the shock of Harriet’s death should not overshadow the beautiful, beloved soul she represented for her family, friends, and fellow members of the San Diego-area HD community, including the monthly support group she loved to attend.

That’s where I met her: she always had a smile and kind words for others. She participated in the breakout group for the affected, separate from the untested at-risk and presymptomatic gene carriers like me.

We got to know each other better through this blog, which Harriet read regularly. She sometimes responded with encouraging e-mails regarding my family’s struggles with HD. She also shared some of her journey with the disease.

Brett Hartl holding photo of mother Harriet (photo by Gene Veritas, aka Kenneth P. Serbin) (To enlarge a photo, just click on the image.)

‘Bad things can happen’ to HD people

On May 17, I spoke with Harriet’s only child and caregiver Brett Hartl at their Del Mar residence, just a few yards from the train track and the Pacific Ocean.

“It was a tough blow when she died, because it was sudden, and sort of an accident, in the sense that it wasn’t the down-the-road thing that would have come eventually,” said Brett, 39, an attorney for the Center for Biological Diversity. “It’s been relatively easy for me to wrap my head around it and process it, because frankly I know enough about HD to understand that bad things can happen. It’s difficult for people with HD to deal with complex tasks that we take for granted.

“At her age, when she would take her walk, that would take all of her focus. I can just totally envision her focusing on walking and tuning out the rest of the world.”

The morning of April 8, a Sunday, Brett went out for a run. Noting that Harriet had been out longer than usual, he checked her GPS location on his smartphone and saw that she was nearby. He expected to meet up with her as she returned home.

However, as Brett neared the railroad pedestrian crossing, he noticed a train stopped on the tracks and many police cars.

“I started to get a little bit of that feeling,” Brett recalled sadly.

He returned to the apartment, hoping to find his mother. Instead, checking her GPS location again, he saw that she was located right on the track.

Fearing the worst, Brett drove to the scene. He saw her body, which the police had covered. Because the officers had Harriet’s smartphone, driver’s license, and Huntington’s disease identification card, they quickly confirmed her identification with Brett.

Brett observes the scene of the accident. The official pedestrian crossing is located at the sidewalk on the far side side of the street (photo by Gene Veritas).

Crossing the tracks

How, some wondered, could a person not notice an oncoming train?

“People don’t realize all the little things that just don’t quite work right in someone’s mind with Huntington’s,” he explained. “When she was focusing on exercise and walking, that was it. That was probably all she could comprehend at one time.”

Brett, who is still awaiting an official accident report from Amtrak, said the train was traveling at about 50 miles per hour, a standard speed for that stretch. He believes she was killed instantly.

“It was not a glancing blow,” he observed. “I doubt she even noticed.”

To complicate matters, the crossing is located just around a bend in the track, at a busy traffic intersection, and just a few yards from the ocean. The surf, vehicle traffic, and other noise probably obscured the train’s advance, Brett said. In that area the train rarely uses its klaxon (horn), he added.

“Here in Southern California, everybody crosses the railroad tracks illegally,” Brett continued, recalling that another individual was killed on the tracks recently. In other words, they don’t use the legal pedestrian crossings.

As we observed the crossing, we noted the posted suicide prevention sign. We saw a number of people go through the crossing without looking down the tracks.

“She had a route,” Brett remembered. “Sometimes she would say, ‘I took the shortcut. I crossed the tracks.’ I said, ‘Don’t do that. Only cross at the crossing station [the legal pedestrian crossing] down there. It’s too dangerous. What if you fall and can’t get up?’”

‘A terrible confluence of events’

The weakened sense of one’s surroundings caused by HD surely exacerbated the situation, he said.

“You’d have to almost turn around over your shoulder to look – which, again, normal people can do,” Brett said. “She was walking in the same direction as the train, so it came up behind her, and the train was in reverse. So the engine was in the back, so it’s extra quiet until it’s actually passed. It was just a terrible confluence of events.”

Brett is not angry at Amtrak. He asked administrators there to tell the employees on the train that they were not responsible for Harriet’s death.

“HD is in my mind was responsible for her death, because she couldn’t handle the normal things that we take for granted,” he said. “In this case, it was crossing the train tracks.”

A passion for travel

Harriet Potash was born in New York City in 1947 and grew up in the area. She studied sociology at Monmouth University in New Jersey. Around that time, she met future husband, Larry Hartl.

Harriet worked as a travel agent, in advertising, and as a teacher. Larry became a producer for the ABC-TV newsmagazine 20/20. He also worked at NBC-TV.

His job took him and Harriet to dozens of countries, including the former Soviet Union, a closed Communist regime.

“Travel was one of her big passions,” Brett remembered. “She’d been to over 50 countries. Even after her diagnosis, in 2011 [at age 64], she didn’t let that stop her from traveling. We did a trip together to Japan in 2013. Then we did the trip to see the polar bears just this last November up in Canada, which was hard for someone for HD.”

Before HD struck, Harriet and Brett also did challenging hikes such as a 15-mile trek in Montana’s Glacier Park.

Brett reflected: “I think people sometimes forget that people with HD used to be completely capable and healthy and active.”

Above, Harriet in Moscow, 1973. Below, in Ecuador in the mid-2000s (family photos).

Confronting HD

Not long after Larry died, Harriet in 2003 moved to the San Diego area to escape the harsh East Coast winters. 

In 2010, she started falling a lot. Brett recommended that she see a neurologist. That led to testing for HD, a disease unknown to the family.

Now, however, it became clear that Harriet’s father had also had HD and passed it down to her: he had emotional outbursts and chorea (involuntary movements), two typical symptoms of HD. His apparent onset – without testing – came very late. He died at 90.

Both Harriet and Brett took a proactive approach to HD.

“I got tested also, in 2011,” Brett said, disclosing that the result was negative. “Most of the immediate family did. My approach, just being who I am, was that I wanted to learn everything I could about it and understand it, the consequences.”

Most people in Brett’s situation postpone or avoid testing.

“For me it was: ‘Well, better to learn now than finding out 30 years from now,’” he said. “It’s not fun. But in the long run it was a good choice.”

So far, none of Harriet’s father’s siblings or her cousins have tested positive, Brett said. He knows of only one other relative with HD.

Harriet’s approach

Harriet regularly attended the San Diego support group of the Huntington’s Disease Society of America (HDSA).

“Having a strong community of other folks going through that was very helpful to her,” Brett said. “She really enjoyed those other people a lot.”

Harriet also participated in research studies and clinical trials aimed at understanding HD and finding treatments.

She also hoped to participate in the Phase 3 trial of IONIS-HTT_Rx, developed by Ionis Pharmaceuticals, Inc., in nearby Carlsbad, CA. The drug lowered the amount of the disease-causing mutant huntingtin protein in patients’ cerebral spinal fluid in Ionis’s historic Phase 1/2a trial.

Swiss pharmaceutical giant Roche, which now holds the license to the drug, renamed RG6042, has not yet announced the Phase 3 timeline but has confirmed that trial sites in the U.S. will be included. (The Phase 1/2a trial was not open to U.S. residents.)

“She had something to look forward to,” Brett said. “She was very excited about the Phase 3 for that next drug. She wanted to make sure that she got in the study.”

Harriet had also just started taking Austedo, another drug developed in San Diego that controls chorea more effectively and with fewer side effects than a similar but older drug, Xenazine (click here and here to read more). Xenazine and Austedo are the only drugs approved for HD in the U.S.

“I think it made a difference,” Brett said of Austedo. “It calmed down some of the movements. She liked it. It helped her sleep better at night. She wasn’t as restless.”

In addition to daily walks, Harriet also worked with a physical therapist and practiced yoga, Brett noted.

“She really got a lot out of daily exercise,” he said. “That was one of her greatest joys and things to plan her day around.”

Just weeks before Harriet’s death, she had decided to donate her brain for HD research. Sadly, the damage from the accident made that impossible, Brett said.

‘A very friendly lady’

Although HD impedes speech, Harriet could still communicate. She kept mentally active and reached out to the community. After her diagnosis, she continued to teach herself Spanish, a skill that allowed her to do volunteer tutoring at a school for underprivileged children. She also volunteered at the San Diego Botanic Garden.

Family, friends, and acquaintances remembered Harriet as outgoing and kind. During a trip to Costa Rica, she started talking with children on a beach. “She just struck up a conversation in Spanish with them,” Brett recalled.

“She was very, very outgoing and open with people,” Brett commented. “She cared a lot about their own personal issues. Even just the other day, at the pizza place down the street, I told some of the folks what happened. They always recognized her as ‘the very friendly lady.’ It didn’t really matter if she knew you for a minute, or a year.” 

Remembering Harriet’s whole life

There was no religious service for Harriet. According to her wishes, her body was cremated.

However, three weeks after her death, Brett and Harriet’s San Diego-area friends held a small remembrance of her at the beach.

Later this summer, Brett and friends and family will scatter her ashes in the Atlantic Ocean near Jones Beach, Long Island, where husband Larry’s ashes were spread.

“She loved both oceans,” Brett said.

He also encourages people to view the online memorial photo album he posted: https://photos.app.goo.gl/2sjV7LlttaohhVkq1.

“It’s a better story than I could actually tell,” he said of the album. “She sure did a lot. She shouldn’t be remembered just in her HD state.”

Brett also set up a donation page in Harriet's honor to support HDSA-San Diego.

Advocacy in the workplace: raising awareness about Huntington’s disease and brain health

In the fight to defeat Huntington’s disease and other brain disorders, advocacy in the workplace can attract new allies, boost awareness, and serve as a bridge to resources for those facing HD.

November 4 will mark five years since I went public about my gene-positive HD status in my essay “Racing Against the Genetic Clock,” published in The Chronicle of Higher Education.

Before that day in 2012, I lived in the “terrible and lonely HD closet,” with virtually nobody outside the HD community, family, and close friends aware of my family’s struggles. My name appeared nowhere in the local, tri-annual HD newsletter that I wrote and edited from 2001-2007. I began this blog in 2005 with a pseudonym, “Gene Veritas,” “the truth in my genes,” a reflection of my status as an HD-gene carrier.

Starting with the Chronicle article, I have integrated my advocacy into my work as a professor at the University of San Diego (USD).

Bioethical challenges

In 2014, I started collaborating with Laura Rivard, Ph.D., an adjunct professor in the USD Department of Biology who teaches a course on bioethics. One of her students, Nazin Sedehi, recorded a video interview of me recalling my family’s experiences with genetic testing for two websites aimed at helping a general audience explore bioethical dilemmas.

I’ve spoken on HD to Dr. Rivard’s class three times. In February 2016, I gave a presentation titled “Huntington’s Disease and Bioethics: A Personal Case Study.” The talk focused on how advances in medicine and biotechnology have provided new tools for understanding both human biology and the situation of HD-affected individuals and families.

“These changes – these huge transformations that we’ve been going through scientifically and socially – have put people in unprecedented predicaments and thus, they are creating new bioethical challenges,” I stated. I reflected on how HD families faced decisions about predictive testing, family planning, abortion, suicide, euthanasia, and more.

You can watch my presentation in the video below. During the other class sessions, I provided commentary and answered questions after we watched the HBO documentary The Lion’s Mouth Opens, about young filmmaker-actress Marianna Palka’s decision to get tested for HD.

Huntington's Disease and Bioethics: A Personal Case Study from Gene Veritas on Vimeo.

‘You are precious’

My advocacy reached a milestone in May, when I traveled with my family to Rome to help represent the U.S. HD community at HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America. I reported on the audience in several blog posts (click here to read one example).

My trip was made possible by USD’s College of Arts and Sciences, the Frances G. Harpst Center for Catholic Thought and Culture (CCTC), the International Center, and the Department of History. Back home, on September 28 I gave a talk exploring the social, scientific, and religious meaning of this extraordinary event. Some 60 students, faculty, and members of the San Diego HD community attended.

In one of the most emotional speeches I have given, I repeated the words of Francis’ address that most moved me:

For Jesus, disease is never an obstacle to encountering people, but rather, the contrary. He taught us that the human person is always precious, always endowed with a dignity that nothing and no one can erase, not even disease. Fragility is not an ill. And disease, which is an expression of fragility, cannot and must not make us forget that in the eyes of God our value is always priceless. Disease can also be an opportunity for encounter, for sharing, for solidarity. The sick people who encountered Jesus were restored above all by this awareness. They felt they were listened to, respected, loved. May none of you ever feel you are alone; may none of you feel you are a burden; may no one feel the need to run away. You are precious in the eyes of God; you are precious in the eyes of the Church!

I told the audience: “I saw HD turn my mother into a shadow of herself. I deeply fear losing my ability to speak and, especially, to write. Hearing that we HD people are ‘precious’ was a huge morale booster.”

I hope that my presentation raises awareness about HD in the U.S. Catholic community and beyond, and helps spur at-risk individuals and others to exit the HD closet and join the movement.

You can watch the speech in the video below, recorded and edited by Scott Lundergan of USD media services.

'Hidden No More': Pope Francis' Historic Audience with the Huntington's Disease Community from Gene Veritas on Vimeo.

Warning about football’s dangers

On October 17, another dimension of my workplace advocacy – the effort to raise awareness at the university about the dangers of tackle football – reached a crescendo. A resolution to ban football at USD, proposed by Daniel Sheehan, Ph.D., Nadav Goldschmied, Ph.D., and me, was voted on in the Academic Assembly of the College of Arts and Sciences.

USD football is a non-scholarship sport, so its profile is not as high as at some campuses, but it has fervent fans among students, alumni, and even faculty. At a USD Faculty Senate meeting last December, President James T. Harris III, D.Ed., reaffirmed his opposition to cancelling the program because, in his words, “no universities have closed their football program […]  because of concussion evidence yet.”

In the weeks leading up to the meeting, I remembered Pope Francis’ encouragement. I also frequently recalled my mother’s struggle with HD and my father, the “HD warrior” who cared for her for more than a decade.

Our resolution focused on the scientific evidence about football’s threat to the brain, especially the disease known as CTE (chronic traumatic encephalopathy), first seen in boxers in the 1920s and, over the past ten years, identified in the autopsies of an increasing number of National Football League, college, and high school players. We cited the publication in July of an article in the Journal of the American Medical Association documenting CTE in 110 of 111 autopsies of decease NFL players. (For the resolution’s rationale, please click here).

CTE produces symptoms similar to HD and other neurological diseases such as aggressiveness and cognitive loss.

However, many faculty members defended the football program because of virtues such as character-building. Surprisingly, this group included biologists and other natural science specialists.

After one of the most heated faculty debates I have witnessed in 25 years at USD, the motion lost, 50-26. However, 30 professors abstained – reflecting perhaps discomfort about offending their colleagues and/or indecision on the matter.

As a brain health advocate, I was disturbed by the vote. In an upcoming article, I will explore the USD debate in detail, in particular how it shows how scientific evidence is often ignored or manipulated in critical debates, and what this means for the HD and other disease communities.

Immediately after the assembly, I met with about 70 members of USD’s chapter of Phi Delta Epsilon, the co-ed pre-medical fraternity, to speak on HD and the papal audience. I urged them, as future members of the health professions, to be aware of CTE and to safeguard the well-being of football players. I also defended the continued inclusion in our health system of those with pre-existing conditions like me who in the past often hid their potential illnesses.

Fraternity president Nicholas DiChristofano pledged that the organization would support the HD community.

A student stands up for her family

As a result of my public stance, USD faculty members, students, and former students have supported the cause with generous donations and participation in the annual Team Hope Walk of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA). Many read this blog.

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, Prof. Yi Sun (of the USD History Department), Gene Veritas (aka Kenneth P. Serbin), Regina Serbin, and Allan Rappoport (photo by Bob Walker)

Through my advocacy, I can connect people to HDSA’s resources.

At day’s end on October 17, I met with Sydney Smyer, a 19-year-old USD biology major.

On October 3, Sydney had sent me the following email, quoted here with her permission:

My name is Sydney Smyer. I am a student here at USD and I attended your talk on Huntington’s disease and the explanation of His Holiness, Pope Francis’ involvement in the Huntington’s disease community. I was quite moved and enlightened, Dr. Serbin. Huntington’s disease runs in my family. My grandfather died from it as well as his father and three of his brothers. His remaining brother has recently been diagnosed with Huntington’s disease. Soon I will be tested, especially because my mother refuses to be tested and my uncle has been showing symptoms for some years now. I think your words would enlighten my family and bring them to the fullness and understanding that is comforting in so much uncertainty for our family members.

Sydney, whose family is Catholic, will share my #HDdennomore video with her family. They have an extremely rare disease known as HDL1, Huntington’s disease-like syndrome, a genetic disorder producing HD-like symptoms.

Sydney and I talked for almost an hour about our journeys with HD. Though I mentioned my own past fears about my HD status jeopardizing my career and insurance, Sydney was adamant about facing HDL1 openly and standing up for her family.

She accepted my invitation to the October 30 meeting of the HDSA-San Diego support group, featuring the highly popular annual HD research update by Jody Corey-Bloom, M.D., Ph.D., the director of the local HDSA Center of Excellence for Family Services and Research.

Stepping forward

To me, there is no more important work in the HD community than the mutual assistance we provide at the support group.

When I exited the HD closet five years ago, I did not imagine that one day a USD student would join our group.

I am grateful to USD and my colleagues for their support as the HD community seeks a treatment for this incurable disorder.

As a professor, I have the privilege of melding my academic work with advocacy.

However, many of us in the HD community have unique skills and positions with the potential for building bridges to our employers and others we associate with on personal and professional levels. Doing so can reap many unexpected benefits.

Sydney's courage should inspire us all to step forward.

‘Crying a few million tears’ for the fallen victims of Huntington’s disease

Huntington’s disease relentlessly attacks the brains of its victims and in other ways wearies many of us involved: advocates, caregivers, gene carriers like myself awaiting onset, young people pondering genetic testing.

Knowing at 56 how fortunate I am to have remained healthy beyond my deceased mother’s age of onset, I took a “break” from advocacy over the summer. (Click here to read more).

However, on October 24 the hard reality of HD hit home once again.

Responding to a request from the Huntington’s Disease Society of America (HDSA) for information on this blog’s impact in the “landscape of HD communication,” that morning I wrote a long e-mail detailing how At Risk for Huntington’s Disease has reached thousands of people via both the web and Facebook.

Since I began writing in January 2005, the blog’s 230 articles have garnered more than 650,000 page views. More than 3,200 Facebook friends also have access to the blog in 60 HD-related groups.

“I think one of the most important aspects of the blog has been the wide range of topics it has covered: my family's struggles with the disease (mother dying, me testing positive, [my daughter] testing negative, etc.), the many social implications of the disease, advocacy issues, and the search for treatments,” I observed.

Reviewing the blog’s history reminded me of many painful moments in my struggle and of the HD community's collective suffering.

A nervous stumble

That afternoon, I had my annual HD checkup with a neurologist.

As with past checkups, in the hours before the visit, I became apprehensive about my performance on the various neurological tests.

One involves walking heel-to-toe along a straight line. This year I began that test with a bit of a nervous stumble. I wondered if that might be an early sign of onset.

I regained my balance and successfully completed the walk. I was going to suggest to the doctor that I repeat it, but she told me that I had done fine.

The other tests also went well.

Fortunately, she once again declared me symptom-free.

Tensing up at support group

Naturally, I felt greatly relieved.

However, I faced yet another challenging HD moment that evening: the annual research update at our local support group, from Jody Corey-Bloom, M.D., Ph.D., the director of the HDSA Center of Excellence for Family Services and Research at the University of California, San Diego.

Each year I record Dr. Corey-Bloom’s talk, later posted here and on Facebook. Striving to produce a video of good quality, I tensed up as I focused in and out and turned the camera to follow Dr. Corey-Bloom’s movements. This was vital information for the HD community.

With the rest of the audience, I intently listened to her presentation of the latest research breakthroughs and news of the crucial clinical trials that provide hope for effective treatments and perhaps even a cure. The update included a detailed discussion of the historic gene-silencing Phase I trial by Ionis Pharmaceuticals, Inc. (Click here to read more about the Ionis trial.)

Given the many projects in progress, Dr. Corey-Bloom spoke for 90 minutes, her longest update ever.

Seeing HD-affected support group attendees reminded me of my good fortune but also of the inevitability of my own onset, if a treatment isn’t found.

You can watch Dr. Corey-Bloom’s update in the video below.

Update on Huntington’s Disease Research 2016: A Presentation by Dr. Jody Corey-Bloom from Gene Veritas on Vimeo.

‘A life-long Holocaust’

Still pondering the exhausting moments of October 24, the next morning I was jolted by a powerful comment on my September 15 article "Dreams for a better future: an opportunity we Huntington’s disease people and our families are denied."

The words speak for themselves:

I am in nearly the same situation as the author of this blog. I am now 59 years old and will be 60 in February. Huntington's Disease killed my father & half my family. My sister is dying now in an extremely horrible case where she is burning so many calories that she looks like a skeleton. I have actually had continual muscle contractions all my life since I was about 25 years old, but nothing else. I've been able to live my life and work and function normally (although, I never married or had children). I've wondered my entire life when it would happen to me. Now, at almost 60, I wonder if this is it, and this is all that will happen, and I wonder why. Why did it kill so many people in my family and not me?

I can't really imagine a more horrible experience in a family. I had a doctor once tell me that he had never seen a single person come out of a Huntington's family who wasn't emotionally damaged for life. He described it as a kind of "life-long Holocaust" where you live your entire life watching one persona after another die the most horrible deaths, and unlike the Jews, you don't have anyone you can blame.

I have cried a few million tears in my life, but now approaching 60, I am able to see some things I could not have seen years ago. I look at myself and my family, and I realize that none of us are the people we would have been without this disease. We all became so much "more." We all learned to truly "see" people, to feel empathy with all people suffering, to appreciate all the small moments and the good things in life. We all embarked on a life-long journey to find meaning and to understand our place and purpose in this world. And, when I look around and see all the various kinds of suffering in this world, it makes me think that maybe this has always been the reason and the purpose for it – to cause us to become "more."

These words not only rekindled my desire to defeat HD; most importantly, they also inspired compassion.

Sarah falls to HD

A diagnosis for Huntington’s disease forever changes the lives of affected individuals and their families.

Without an effective treatment, thousands of people around the world continue to succumb to HD.

On October 17, Huntington’s took the life of 37-year-old Sarah Brook of Tamworth, England.

Many in the HD community became familiar with Sarah’s struggle on “Sarah’s Dream,” a Facebook page run by her mother Gail and stepfather Jeff. “Sarah’s Dream” is also the name of a motorcycle the family used in the effort to raise funds and awareness. According to Gail, Sarah’s first symptoms appeared in her early twenties. Sarah's father died of HD at the age of 35.

“This is the saddest time of my life,” Gail wrote on Facebook. “Nothing could compare to the loss and heartbreak I feel. […] It's the wrong way round, this shouldn't be happening. I can't bear the thought that I'll never see her again. I want to hold her so much.”

Sarah’s funeral took place on November 3. Her body was cremated.

“We've put her near the TV,” Gail wrote of Sarah’s ashes, held in an urn. “She's always liked her telly, and [we] will scatter them in the place she chose, when we feel ready.

Despite their enormous loss, Gail and Jeff will continue in the fight against HD.

“We've been married for 33 years and he adopted Sarah, knowing that she was at risk of HD,” Gail wrote me in a Facebook message. “We have agreed to carry on with Sarah's Dream, in memory of Sarah.”

We need to find a way to wipe away the tears of HD. Perhaps we can be heartened by the profound dedication to the cause displayed by Sarah's family.

Above, a collage of photos of Sarah Brook. Below, Jeff Brook riding Sarah's Dream (family photos).

From sheepish to self-assured in the fight against Huntington’s disease

Occasionally some readers of this blog have told me that, in comparison with their own travails, it seems that I cope well with living at risk for Huntington’s disease.

With two decades of experience in the HD fight, a loving family, and a support system that includes a helpful psychotherapist and other health professionals, I’ve become more self-assured.

However, the hard truth is that I have struggled a lot.

Each act of advocacy, including the articles I post here, represents a challenge.

Driven by fear of the illness, I’ve constantly strived to improve my advocacy.

I’ve also been inspired by the dedication and ingenuity of HD researchers as they’ve advanced towards the first treatments for this complex, incurable disorder. I believe that the hope of effective treatments has boosted the overall morale of the HD community.

Scientists, physicians, drug companies, and advocates all unite forces in this historic quest. Ultimately, HD-affected families hold the key to success. Without our participation in research studies and clinical trials, we won’t defeat HD.

The ‘HD closet’

I first heard about HD when I learned of my mother’s diagnosis, the day after Christmas 1995. I was about to turn 36.

I immediately started educating myself about the disorder, including the fact that, as the child of an affected parent, I had a 50-50 chance of having inherited the defective gene.

I started attending a monthly HD support group. A few years later I became very active in the local chapter of the Huntington’s Disease Society of America (HDSA).

However, for many years I hid in the “terrible and lonely HD closet,” telling nobody but close relatives and friends about my family’s plight.

I quickly learned to feel comfortable around other HD advocates and support group members, but, when first attending public events, I acted sheepishly.

Thanking my geneticist

Last week, I wrote a thank-you e-mail to Dr. O.W. Jones, who made a very generous donation to my family’s team in the HDSA-San Diego Team Hope Walk, held April 10.

Dr. Jones was the geneticist who delivered fateful news to me in 1999: I carried the HD gene.

In early 2000, he brought the best of news: our daughter-to-be had tested negative for HD in the womb.

Every year I send Dr. Jones, now retired, our family Christmas photo. It’s my way of thanking him again for his assistance, and also a way for us to both recall his sage observation after I received my test results: “a positive test is not a diagnosis of the disease.” I’ve lived with that knowledge for nearly 17 years without developing classic symptoms.

“Hi Ken: Keep it going!” Dr. Jones wrote on our donation page.

Summoning up courage

As I sent my latest note to Dr. Jones, my mind hurtled back the first HDSA-San Diego fundraising gala in October 2001. HDSA presented Dr. Jones with its Distinguished Leadership Award for, as I later wrote in an anonymous article in the chapter newsletter, “his informed and compassionate assistance to the many families faced with the traumatic difficulties of genetic testing for the disease.”

It was my first high-profile HDSA event, with community leaders such as San Diego Chargers President Dean Spanos present. Dr. Jones’s family also attended.

I had never ventured to bring up HD with anybody outside my inner circle, yet I wanted to personally express my appreciation for Dr. Jones. With great trepidation, I approached one of Dr. Jones’s relatives, an adult daughter. In general terms, but with great emotion, I told her how her father had played a very important role for my family.

I had to summon up great courage to say those words. In a very tentative way, I had “come out” about HD.

Small steps are okay!         

Like life, advocacy is a process. Many of my early blog articles reveal how long and difficult the path to greater self-assurance has been.

Indeed, only in late 2012 did I fully exit the HD closet.

It’s still not totally comfortable for me to address HD with people outside my inner circle.

Indeed, who could ever be completely self-assured when facing a disease like Huntington’s?

Ultimately, overcoming the insecurity resulting from the threat of HD starts with joining the cause.

Small steps are okay! With time, they will lead to bigger ones.

The accumulation of small steps by many people is powerful. As I always tell people in online discussions or e-mails, “together we will beat this disease!”

Becoming more assertive

At the first HDSA-San Diego Team Hope Walk in early 2012, my family had a small team and raised very little money.

Since going public later that year, I have grown more assertive.

The exhortation of one leading local advocate at our support group has often guided me: if we don’t tell our stories, why should anybody care about us?

I have shared my family’s story with as many people as possible: relatives, friends, co-workers, high school and college classmates, and new acquaintances.

In the last three walks we have entered, my family’s team has raised more than $30,000 for HDSA, thanks to our generous donors.

In addition to raising funds, we’ve educated scores of people about Huntington’s disease and the need for treatments.

This year’s San Diego Team Hope Walk was especially poignant. After the several hundred participants finished the course, we held a minute of silence for Terry Leach, the brave 18-year-old San Diegan who lost his life-long fight against HD on January 2. Terry's mother Angela took part in the walk.

It’s time to stop the suffering caused by HD, help point the way to cures for other neurological and rare diseases, and make brain health a national priority.

(In the spirit of assertive advocacy, I dedicate this article to the members of the Serbin Family Team and the many donors who supported our participation in the 2016 Team Hope Walk. Thanks to their generosity, we garnered $9,400 for HDSA, making us the top local walk fundraiser for the third time! Scroll down for photo highlights of the walk.)

The Serbin Family Team at the 2016 HDSA-San Diego Team Hope Walk: from left to right, Gary Boggs, Yi Sun, Regina Serbin, Dory Bertics, Isabelle Wisco, Bianca Serbin, Allan Rappoport, and Kenneth P. Serbin (aka Gene Veritas) (photo by Randy Oto). Not pictured: Jayne Millum and Cindy Stempien.

Serbin Family Team members Gary (left), Ken (Gene Veritas), Regina, and Yi with downtown San Diego skyline in background (personal photo)

Advocate Sharon Shaffer, affected by HD, greets former HDSA-San Diego president Bill Johnston, public relations director of the San Diego Chargers and recognized during the event along with daughter Hayley for their leadership in the HD cause (photo by Gene Veritas)

HDSA-San Diego vice president Misty Daniel (left) recognizes Tim Schroeder, one of the top Team Hope Walk fundraisers, for his steadfast, exemplary fight against Huntington's disease (photo by Randy Oto).

Misty and Angela Leach, mother of deceased juvenile HD patient Terry Leach, at the start of the minute of silence for Terry (photo by Randy Oto)

Participants in the 2016 HDSA-San Diego Team Hope Walk (photo by Randy Oto)

Fanny & the Attaboys provided live entertainment (photo by Randy Oto).

Gene Veritas (left) with HDSA-San Diego president Burt Brigida (personal photo)

Paul Negulescu (left), vice president of research at Vertex Pharmaceuticals, a sponsor of the Team Hope Walk that conducts HD research, with Gene Veritas, Debbie Negulescu, and Heather Farr of Vertex (photo by Bianca Serbin)

Team Hope medals awarded to all participants in the Team Hope Walk (photo by Randy Oto)

The path to the cure of Huntington's disease (photo by Randy Oto)