Friday, April 15, 2016

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)

Monday, April 04, 2016

Just living life: a focus on what matters most in coping with the risk of Huntington’s disease

As a carrier of the Huntington’s disease gene who’s reached the age of 56 without apparent HD symptoms, I believe that the emotional release associated with this blog – sharing my fears, hopes, and advocacy – has helped me stave off the inevitable onset of the disorder.

Ideally, I’d like to write in this blog weekly.

However, I don’t always have time, as evidenced by my taking nearly a month to post an update.

I regret the delay, because I have a growing list of critical developments in advocacy and research to report on, for example, the results of the 11th Annual HD Therapeutics Conference, held in February.

However, like so many people in this harried world, I juggle multiple demands involving family, career, and community.

Beyond that, those of us in the HD movement (and in other disease communities) have the added responsibility of caregiving, multiple forms of advocacy, and/or living with the disease or its threat.

Ever more conscious of life's brevity and my good fortune in remaining asymptomatic, I’ve been focusing on what matters most.

Being there for the family

One of my deepest fears about HD concerns losing the ability to support my family. Having seen my mother decline terribly because of HD, I long worried that I would become a financial and medical burden for my wife Regina and daughter Bianca, or, worse, that I might not see Bianca graduate from high school.

In my current stable health, I devote time and energy to helping Bianca transition from teenager to young adult.

A few weeks ago, I acquired a third family car so Bianca can drive my “old” Nissan Altima when she gets her license. While we’re fortunate to afford an extra car, it’s no luxury; it will allow her to drive to school, freeing Regina and me each from several hours of driving weekly. We also recognize that having a car is a rite of passage in America, especially in the auto-oriented culture of Southern California.

Once again, HD factored into our family decision-making: seeking to economize and plan prudently, we bought a used 2013 Honda Accord in good enough condition that, as Regina put it, could last me until retirement.

As my trusted mechanic put it, the four-cylinder Accord’s engine is “God’s gift to humanity” because of its reliability. As a teenager, I had always admired the Accord and daydreamed about owning one. Lately, I’ve come to detest driving because of the crazy Southern California traffic – I long for a mass-transit system like those in European cities – but the Accord has brought back some of the enjoyment.

Priority over the blog

I had planned on buying a car only when Bianca received her license later in the year, but a major connection in my HD journey saved me the headache of shopping for one by alerting me to the availability of the low-mileage Accord.

Rob Millum, a friend whom I met while serving on the board of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA) and also a former member of the HDSA national board, works as a consultant for Affinity Development Group and administers the Costco Auto Program.

Rob’s a natural leader who cares about serving humanity. With his auto dealer’s license he helps people save money on nearly new cars and recreational vehicles. He doesn’t need to work full-time but does so to help support the HD community and other causes.

Rob and I have had deep conversations about HD, this blog, and life in general. When I couldn’t attend the 2011 HDSA convention to receive the HDSA Person of the Year Award, Rob accepted the honor in my name.

And Rob’s a darn good car guy, too!

At 2011 HDSA national convention, HDSA Chairman of the Board Don Barr (left), Rob Millum, and HDSA CEO Louise Vetter as Rob accepts HDSA Person of the Year Award for Kenneth P. Serbin (aka Gene Veritas) (photo by Ashley Miller).

In 2010, Rob helped me purchase my 2011 Altima through Costco’s no-hassle program; his nephew was the salesman. I then parted with my 1999 Corolla, my so-called “DNA car,” which had those highly symbolic letters on the license plate and which had carried me through many miles of HD advocacy (click here to read more).

We had upgraded to the bigger, sturdier Altima for safety reasons. Now it will become Bianca’s car.

Dealing with my credit union’s loan department, figuring out the high-tech gadgetry of the Accord (the owner’s manual is 595 pages long!), and other details of the purchase took priority over this blog.

Other aspects of my HD advocacy have also reduced the time for the blog, for example, raising funds for the 2016 HDSA-San Diego Hope Walk, set for April 10 (click here to donate to our team). Support for HDSA is essential in the quest for treatments.

Just living life

Despite the new financial load of car payments along with our mortgage and other payments, I felt grateful about handling the details of the Accord purchase for my family.

It’s reminded me how quickly our “miracle baby” – who tested negative for HD in the womb in 2000 – is growing up. The toddler I used to push in a stroller at the zoo now practices driving the Altima on the freeway. We’re starting the search for colleges.

I also remind myself to focus on the basics to help avoid HD onset: a healthy diet, good sleep habits, and regular, vigorous exercise. I can get lackadaisical about all three!

Spending more time on the essentials, as well as enjoying life more fully, takes time away from HD advocacy and blogging.

I feel that I need a break from the din of the Internet, the 2016 presidential campaign, the TV commercials, the political crisis in Brazil (the country I research), the e-mails and Facebook postings concerning HD, and all the other things that diminish my peace of mind.

The Easter Vigil Mass I attended on March 26 provided a respite, with two hours of chanting and scriptural readings, a stark contrast with our daily lives outside the sanctuary.

Knowing how many of my symptomatic "HD brothers and sisters" valiantly cope with the disease, I’m thankful for the chance to just live life.

Friday, March 11, 2016

Billboards: an old – but also new – way of projecting the Huntington’s disease cause

The San Diego Chapter of the Huntington’s Disease Society of America (HDSA-San Diego) has taken its advocacy to a new level with billboards announcing a chapter fundraiser, the Fifth Annual Team Hope Walk on April 10.

At five high-traffic locations in the San Diego area, the billboards went up on March 7 and will remain up for 30 days, according to Misty Daniel, the HDSA-San Diego vice president. Misty originated the billboard idea, the first time it’s been used in the San Diego chapter, one of the most active in the country.

The billboard calls on the public to “register today” for the Hope Walk at the website

The HDSA-San Diego 2016 Team Hope Walk billboard on Mission Gorge Road south of Twain Avenue in San Diego (photo by Gene Veritas, aka Kenneth P. Serbin)

“As a group, we’re not very good advocates for ourselves,” Misty said of the HD community in a phone interview. “This disease affects as many people as cystic fibrosis, but you’ve heard of cystic fibrosis.”

Huntington’s disease still lacks such instant public recognition, Misty observed.

“It’s not just that it’s a rare disease, but it’s rarely known,” she explained. “I’m tired of educating physicians and telling people that I have this in my family and them not having a clue about what it is.”

Misty said she wants the billboards to bring awareness of HD to the “point where I say, ‘I lost my mom to Huntington’s disease,’ and they’ll say, ‘I know what that is. I’m sorry.’ It’s getting harder and harder to use Woody Guthrie as my person to reference. More and more people are saying: who is Woody Guthrie?”

Guthrie – one of the greatest American folk singers of the 20th century and the composer of “This Land is Your Land” – died of HD in 1967, at 55. That year his wife founded a network of HD support groups and advocates that would become HDSA.

Billboards are a traditional, “old media” way of generating publicity. However, in this case they project a 21st-century imperative: the need to cure neurological diseases. They reflect the ongoing high level of creativity in a community facing one of the most devastating of those disorders (click here to read more).

A passionate, resilient advocate

At 38, Misty is a passionate, resilient veteran of the HD cause.

She became an advocate for HDSA-San Diego when she was just 19. She lost her mother Rosie Shaw to the disease in 2007. Misty tested negative for HD two years later. A brother with HD died in a motorcycle accident, losing control of the vehicle perhaps because of the disease. Her sister Brooke, 46, has HD symptoms. Three other siblings remain untested.

Misty speaks at HD events such as the chapter’s second annual convention, held March 5. (I’ll have more on this event in a future article.) She advocates for the passage of the Huntington’s Disease Parity Act, a bill in Congress to update the Social Security Administration’s long outdated definition of HD as a disease causing only involuntary movements. That situation prevents people affected by psychiatric and cognitive symptoms from qualifying for Social Security disability payments. In addition, she assists drug makers involved in HD clinical trials and other HD research.

Misty also helps organize the local Hope Walks. About a year ago, she started thinking about the possibility of billboards.

“HDSA does not spend any money on advertising – not nationally or locally – because we want as much of the dollars raised to go to HD care, advocacy and research as possible,” HDSA CEO Louise Vetter said in an e-mail. “This is an important policy and principle in how we steward the funds raised for our fight.”

So Misty and other advocates raised the $2,000 needed to pay for the billboards. One of Misty’s untested siblings donated $1,800. The Clear Channel media company, the owner of the billboards, charged a nonprofit rate.

She pointed to key participants in the effort: HDSA-San Diego board secretary Jamie Jirik; HDSA staffer Stephanie Alband; former Clear Channel Radio employee Sherry Toennies; and board member Paul June, whose branding firm designed the billboard.

“At the end of the day, this is what HDSA-San Diego is all about: grass roots efforts,” Misty said.

Misty Daniel at the 2014 San Diego Hope Walk (photo by Gene Veritas)

Catching families’ attention

“Huntington’s disease has carried a stigma for so long,” Misty said of the need for the billboards. “We continue to perpetuate the stigma generation after generation.”

The fear in HD families is “overwhelming,” she continued. That fear “is not only palpable but it is a real reason to control how we talk about” HD and share about it.

However, Misty has sensed a change in the community.

“With the launch of the Internet and social media, more and more people are confident about sharing their stories and talking publicly about Huntington’s disease,” she said. “This is what’s going to whittle away that stigma, more and more people talking about it.”

Misty hopes that the billboards will catch the attention of other HD-affected families in the San Diego area who until now have had no contact with the chapter, events, and support group.

According to Vetter, advocates in the Upper Midwest used billboards in the early 2000s. In addition, some national ad campaigns have run in magazines like TIME.

“Billboards are a great way to raise visibility of the Team Hope program and HD to the broad San Diego community,” she said. “They can spark curiosity to learn more about HD, as well as fuel engagement to take part in the Walk.

“Additionally, these billboards can validate the participation of those who are already part of our fight to help HD families. When you see an ad or a billboard about something you are involved in, it breeds pride and a deeper connection to the cause. For the HDSA San Diego Chapter, this can mean new volunteer leaders and the ability to have a greater impact.”

More than a logo

To stir broad interest, the billboards portray a family at a previous Hope Walk in another city.

Unidentified, the family has a sign with the words “I’m walking for: Ray Jacks – our brother.” (On the billboard it’s not clear whether the surname is “Jacks” or “Jackson.”)

Another angle of the billboard (photo by Gene Veritas)

As of this writing, I was unable to identity neither the family nor the person for whom they were walking. Regardless, Misty stressed that including the photo was highly important. (All HDSA walkers sign a waiver permitting use of their photos, she noted.)

“We wanted to make sure that the billboard had actual people on it, because this is a disease that has been faceless for too long,” she said. “We felt that if it had only a logo, we would be doing the Huntington’s disease community a disservice.

“No, this is not a clipart. It’s a real family.”

Later Misty hopes to reach out to the family.

“I want them to know they’re on this billboard,” she continued. “This generation is walking on behalf of those who can no longer walk for us.”

It strives for a cure, she said, to prevent another generation from suffering from HD.

Please support my family’s team, the "Serbin Family Team," in the 2016 HDSA-San Diego Hope Walk by clicking here to join us and/or make an online donation.

Featuring music, prizes, food, family fun, and more, the walk will take place at Coronado Tidelands Park, 2000 Mullinex Drive, Coronado, CA, 92118. Walk registration starts at 8 a.m. and the event at 9 a.m. Proceeds benefit HDSA.

A selfie of Gene Veritas, aka Kenneth P. Serbin, at the billboard