Nora Guthrie: we’re all ‘hoping machines’ in the fight against Huntington’s disease

The cause to defeat Huntington’s disease came full circle at the recent HD Therapeutics Conference, where keynote speaker Nora Guthrie recalled the brave struggle against the disease by her father, iconic folk singer Woody Guthrie, and the groundbreaking advocacy of her mother Marjorie, the founder of the Huntington’s Disease Society of America (HDSA).

“We are the hopers and the changers,” said Nora, 68, quoting her father, to the audience of 350 scientists, drug company representatives, and family advocates gathered at the 13th annual meeting in Palm Springs, CA, in late February. “The note of hope is the only note that keeps us from falling to the bottom of the heap of evolution, because about all a human being is anyway is just a hoping machine.”

The conference was sponsored by CHDI Foundation, Inc., the nonprofit virtual biotech dedicated to developing HD treatments. Like a number of past keynoters, Nora preferred not to have her presentation recorded. She interweaved her father’s music – he wrote “This Land is Your Land” – with the family’s struggles against HD.

However, Nora agreed to an interview with me in which she reflected on the early days of HDSA – started in 1967, the year her father succumbed to HD, when she was 17 – and the progress towards treatments.

Nora Guthrie (right) being greeted by Sarah Tabrizi, FRCP, Ph.D., with Blair Leavitt, MDCM, FRCP (left) and Gregory Suter looking on (photo by Gene Veritas, aka Kenneth P. Serbin)

A vast HD ‘tribe’

I was thrilled to meet Nora. Watching and interacting with her helped me connect with a giant of American history as well as with what she called the vast HD “tribe” that Marjorie had started.

Before our formal interview, in conversations with Nora, I also relived key moments in my personal journey with HD.

After her keynote, filled with emotion, I hugged Nora, telling her that my mother had died of HD.

Nora was at first befuddled by my pseudonym, “Gene Veritas.” I explained to her that it meant “the truth in my genes,” a reflection of my condition as an HD gene carrier.

During one dinner, I told how, in the late 1990s, my efforts to get background on the disease and the cause led me to study Woody’s life and watch the 1976 film Bound for Glory, based on his autobiography and portraying his early phase as a drifting folk singer. Nora recalled her personal impressions while on the set.

“I feel a spiritual connection with you and your family,” I told Nora at the outset of our interview. “Thank you for being here, and thank you for speaking out for us, just as your father spoke out for so many people.”

Impressed with the research progress

As I proceeded to my first question, Nora interjected: “Not just speak out, but speak up.”

In that comment, and many of her other responses during the interview, Nora quoted her father or echoed his singular eloquence with her own plays on words and unique phrasing.

I asked Nora what it was like to speak to the scientists.

“For me, it was like a sci-fi movie, because coming from my early years with Huntington’s with my father in the late 1940s and early fifties, when there wasn’t one person you could talk to, not one doctor that knew anything about Huntington’s, not one social worker to help you get through it, not one support group,” she said. “Our family was kind of inventing how to deal with Huntington’s in those days. There were no pamphlets. There were no guidelines. So, we were going day to day, day by day, inventing – trying to be creative, trying to be helpful, trying to figure out even what the symptoms were.”

Nora recalled the first HD benefit concert Majorie organized at Carnegie Hall in New York City in 1968, with Woody’s musician friends

Today, Nora said, just at events like the CHDI conference, hundreds of “young, energetic, and smart” people are focused on developing treatments – all descendants of Marjorie, the “Eve” of the HD movement. To Nora, they represent hope for the community. 

Devoted to preserving her father’s legacy, Nora still seeks to combine music with HD advocacy. She described the concert she organized last summer in Berlin, gathering musicians and HD families and organizations.

“For me, the music and the art and the sciences are one group,” she said.

You can watch the interview in the video below.

A cure: when, not if 

Like all children of an HD-afflicted parent, Nora was born with a 50-50 chance of having inherited the genetic defect. In her talk, she did not broach the issue of genetic testing. We also did not discuss it in our interview. For many in the HD community, that is a private matter. 

At age 68, Nora has passed the age of typical onset. She looks to be in excellent health. According to Woody biographer Ed Cray, Nora declined testing. So did her famous brother Arlo, a musician born three years earlier. Their brother Joady tested negative for HD in the early 2000s. (Two half-siblings died of HD.)

I wished Nora and her extended family the best of health.

Finally, I wanted to know what her parents would say about the advances in HD science, if they were alive today.

"I think the most impressive thing for them is an affirmation of their belief in humanity," Nora said. "That people are interested. That people do care. That a cure is down the road. It's just a question of when, not if."

In chronicling the quest to cure Huntington’s disease, a whirlwind of emotions

Covering the 13th Annual Huntington’s Disease Therapeutics Conference left me with immense hope about potential treatments but also, as in the past, a whirlwind of emotions regarding the disorder that killed my mother and threatens the lives of tens of thousands of HD patients and presymptomatic gene carriers like me.

The conference began on February 26 with a remarkable keynote speaker invited by sponsor CHDI Foundation, Inc.: Nora Guthrie, the daughter of iconic folk singer and activist Woody Guthrie, who died of HD in 1967, and his late wife Marjorie. In 1967, Marjorie founded what would become the Huntington’s Disease Society of America (HDSA).

“We are the hopers and the changers,” said Nora Guthrie, quoting her father, to the audience of 350 scientists, drug company representatives, and family advocates. “The note of hope is the only note than can help us or save us from falling to the bottom.”

CHDI keynoters, who always come from HD-affected families, aim to inspire researchers’ quest for treatments. (I led off the 2011 event.) Guthrie interweaved her father’s music – he wrote “This Land is Your Land,” performed at President Barack Obama’s 2009 inaugural celebration – with the family’s struggles with HD.

CHDI Chief Scientific Officer Robert Pacifici, Ph.D., with Nora Guthrie (photo by Gene Veritas)

As reported in my previous article, the conference closed with the “best news since the discovery of the gene” in 1993: the Ionis Pharmaceuticals drug IONIS-HTT_Rx lowered mutant huntingtin protein an average of 40 percent, with a maximum reduction of 60 percent, in patients’ cerebrospinal fluid in a Phase 1/2a clinical trial (testing mainly safety and tolerability).

Based on animal studies, that translates into reductions in the cerebral cortex ranging from 55-85 percent. Ionis partner Roche, a major pharmaceutical firm based in Switzerland, confirmed that it would take the unusual step of skipping a Phase 2 trial (testing efficacy for the first time) and going directly to a Phase 3 (test and confirming efficacy in hundreds of participants).

I was elated to meet Nora, hear the Phase 1/2a results, and interview Roche representatives about the next steps in the clinical trial program for RG6042, the drug’s new name. (Roche and HDSA will update the HD community on Phase 3 eligibility criteria and other details.)

Upcoming articles will feature my interviews with the Roche officials and Guthrie.

Erik Lundgren (left), lifecycle leader of the Roche HD program, Gene Veritas (aka Kenneth P. Serbin), Mai-Lise Nguyen, patient partnership director of the Roche HD program, and Lauren Boak, Ph.D., Roche global development team leader (selfie by Erik Lundgren, Roche)

How early does HD start?

With several dozen presentations over 72 hours, the conference was a barrage of information about HD. Despite the positive news, like the six previous CHDI conferences I’ve attended, this event brought a stark reminder of the devastation caused by HD and the community’s urgent need for treatments.

I tested positive for the HD gene in 1999 and will, unfortunately, inevitably develop symptoms – unless a treatment becomes available soon. Watching the scientists’ presentations – many referred to the havoc caused in HD-affected brains – felt like getting a preview of how I’ll decline and die.

Sandrine Humbert, Ph.D., of the Université Grenoble Alpes (France), discussed the role of the huntingtin protein in the development of the cortex (the largest portion of the brain) of mice. Her research explores HD as a possible “developmental disorder,” that is, the progression of symptoms from the earliest stages of life, given that people like me are born with the genetic defect.

Dr. Humbert said that subtle signs of the disease appear “years before” the appearance of involuntary motor movements, which doctors until recent years used as the indicator of onset. Perhaps drugs targeting the “abnormal development” of the brain will be needed to “delay disease onset,” she concluded.

Further research is needed in this new area of HD science. Still, Dr. Humbert’s presentation and the subsequent Q & A with scientists made me wonder: as I push 60, are the memory lapses and other cognitive changes I’m experiencing because of ordinary aging – or HD?

In the video below you can watch the discussion of this point. For Dr. Humbert’s complete presentation, click here.

How early do Huntington's disease symptoms start? from Gene Veritas on Vimeo.

‘A bucket of cold water’

My interactions with physicians, scientists, and HD family members further reminded me of my “race against the genetic clock” and the challenges faced by HD families.

Despite the air of excitement about the Ionis Phase 1/2a results, one doctor familiar with my story cautioned me about the extensive time needed for Phase 3: “It’s a little bit naive to not consider that you might not be ready for the Ionis drug.”

“I feel like you’ve just thrown a bucket of cold water on me,” I told her.

The range of onset for someone with my mother’s and my level of mutation is between the late 40s and late 60s. She probably developed symptoms in her late 40s. She died at 68. At 58, I’m extremely lucky to have gotten this far without symptoms.

I can’t wait much longer for a drug. If successful, RG6042 probably won’t reach the market for five or six years – and that’s an optimistic scenario, since Phase 3 could fail.

The physician reminded me of the importance of planning carefully for the onset of symptoms, citing the case of one patient who was able to remain at work after some adjustments to his routine.

She did note that my advocacy and coverage of the CHDI meetings might be delaying onset: they provide me with purpose and intellectual enrichment.

Reliving the shock

At one lunch, I briefly recounted my family’s HD story to a group of researchers and the Swiss neurologist Jean-Marc Burgunder, M.D., who chairs the executive committee of the European Huntington’s Disease Network, a CHDI-supported nonprofit network for advancing research, facilitating clinical trials, and improving patient care.

I explained that, with no prior knowledge of HD, I received a bombshell in a phone call the day after Christmas 1995. In the space of a few minutes, I learned of my mother’s genetic test and diagnosis; my 50-50 chance of inheriting the gene; and the potential risk for any child I might father.

Dr. Burgunder observed that HD testing centers now have a protocol that includes notifying potentially at-risk family members about genetic testing and counseling by geneticists and psychologists.

Back then, however, all I could do was to call my mother’s geneticist to get more information about HD and genetic testing.

To relive the emotional pain of that day and look back on the improved genetic testing process made me feel as if I were going through an out-of-body experience.

Sadly, learning about HD for the first time remains a shocking experience that won’t be eliminated until we have effective treatments.

Listening to other HD family members recall their stories of genetic testing of their children, I also remembered the months-long, anxiety-ridden process of having our daughter tested in the womb for HD. Luckily, she tested negative.

Research: ‘It’s for you guys’

Despite my renewed fears about HD, the final, upbeat session on “huntingtin lowering”  (reducing the amount of huntingtin protein in brain cells) lifted my spirits. In addition to the Ionis news, it included an update on another, recently started Phase 1b/2a gene-silencing clinical trial, PRECISION-HD, run by Wave Life Sciences. (Click here to watch a video of the presentation.)

During that session, I sat next to Scott Zeitlin, Ph.D., of the University of Virginia, whose presentation concerned his research in transgenic HD mice, a common tool of researchers, to measure the effects of lowering huntingtin. He described the types of changes in the animals’ brains that also compromise the human brain.

I was heartened to hear his conclusion.

“Many of these earlier changes that we see can be reversed fairly quickly,” he said of the experiment. “So I’m enthusiastic about this.”

Though the presentation was based on unpublished research – scientists don’t like to get “scooped” – Dr. Zeitlin gave permission to post it online (click here to watch).

“It’s for you guys,” he said, referring to the HD community and echoing the ethos of the quest for treatments.

Scott Zeitlin, Ph.D., with Sarah Tabrizi, FRCP, Ph.D., lead investigator of the Ionis Phase 1/2a trial (photo by Gene Veritas)

Personal and community milestones

I left the conference at 10:45 p.m. on March 1, as the farewell banquet wound down. I had drunk a couple of cups of strong black tea – normally something an HD gene carrier should avoid but which I needed for the 140-mile drive to my home in San Diego.

I arrived at 1:10 a.m. the next morning and, wired from the tea and the conference, started work on my article about the event. I finally went to bed at 5 a.m. – also not good for an HD gene carrier but perhaps understandable given the circumstances.

It was titled: “The best news for the Huntington's disease community since the discovery of the gene: Ionis trial data revealed, Roche confirms jump to Phase 3” (click here to read more).

Appropriately, it was entry number 250 in this blog: a personal milestone symbolic of my avoidance of symptoms, of my advocacy, and of the hope for treatments or even a cure.

(Visit my Vimeo album for other presentations and interviews at the conference.)

(Disclosure: I hold a symbolic amount of Ionis shares.)

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 www.TeamHopeWalk.com.

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

At-risk Angels pitcher Joe Smith at Huntington’s fundraiser: ‘I’d give every dime I have for a cure’

No one person is the face of Huntington’s disease the way ALS is associated with Lou Gehrig or Parkinson’s disease is linked with Michael J. Fox. But HD touches many lives, including some we know from major league sports.

Choking back tears, 31-year-old Los Angeles Angels baseball pitcher Joe Smith remembered the phone call three years ago from his father back in his native Ohio that changed his life forever: his mother had been diagnosed with Huntington’s disease.

“Unfortunately, I got a call driving home from our spring training site in Goodyear, Arizona, from my dad,” Joe told an audience of over 400 people at a San Diego fundraiser on October 10. “He told me: mom had HD.”

Then Joe recalled when his mother Lee came on the phone on that day in February 2012, not long after she had received her genetic test results confirming she had HD.

“I’ll never forget the sound of her voice,” he said. “It was just empty. It was the worst. I never heard anything like it. That stayed with me for a long time, that sound, when she said, ‘Hi, Joseph,’ but the way she said it […] was different. And it hurt. It still does, obviously. This time, when she got the news, I still didn’t know a whole lot about HD. But obviously, when you get off the phone with the parents and got a 30-minute drive, there’s a lot of thinking that goes on.”

He’s done a lot of thinking – and action – since then.

For his efforts to raise awareness and funds for the HD cause, Joe received the Guthrie Award of the Huntington’s Disease Society of America (HDSA) at the San Diego chapter’s 15th Annual Celebration of Hope Gala, held this year at the spectacular coastal residence of Craig and Rebecca Irving. Craig is a businessman and philanthropist.

Above, Joe Smith and mother Lee (photo by Gene Veritas, aka Kenneth P. Serbin). Below, Celebration of Hope Gala attendees mingling before the start of dinner and the formal program (photo by Mike Nowak).

Staring HD in the face

Joe remembered his family’s four-hour drives from southern Ohio to Cleveland to visit Lee’s mother, who, the family knew, suffered from HD. Seeing his grandmother’s progressively worsening symptoms at each visit left Joe sad and concerned as a child and teenager.

“I think that’s the scariest part,” Joe continued. “It’s one thing, I think, to go through life, or to have something that not necessarily you don’t know about, but […] my mom took care of my grandma, she went to doctor visits with my grandma, she was on the phone all the time with my grandma.

“When you know the road you’re heading down, and right now there’s nothing that you can do about it, you’re just going. You’re hoping there’s light. You got hope. You got faith. But at the end of the day, right now, there’s no cure.”

Lee did not speak at the gala but talked about her symptoms in a brief video shown to the audience.

“She stares it right in the face every day,” Joe said, referring several times to his mother’s fortitude.

Joe ended his speech with a call to boost fundraising for HD research.

“I’d give every dime I have if they had a cure today,” he declared.

You can watch Joe’s speech in the video below. View other videos of the event by clicking here.

Los Angeles Angels' Joe Smith: 'I'd Give Every Dime I Have for a Cure for Huntington's Disease' from Gene Veritas on Vimeo.

Taking public action

As the children of an HD-affected parent, both Joe and his 29-year-old sister Megan Nein have a 50-50 chance of inheriting the genetic defect.

Joe has previously talked to the press about his fears of living at risk.

“My sister has three kids and she hasn't been tested,” Joe said last March. “I got married recently, and I'll get tested before we have kids.”

He didn’t speak directly about his fears at the gala, but they were palpable throughout his speech.

Both Joe's and HDSA CEO Louise Vetter’s comments once again demonstrated how HD can devastate the extended family because of its genetic cause and difficult caregiving burden.

“It’s not easy to come out and say you’re from an HD family,” Vetter said in introducing Joe. “If one of your parents has it, you don’t know if you have it or not. So it takes a lot of courage to face your future.”

Recalling Woody Guthrie’s widow Marjorie’s founding of HDSA in 1967, the organization recognized Joe with the Guthrie Award because of his “bravery” in confronting HD, she said.

Too often conversations about HD take place “behind closed doors,” Vetter observed.

The Smith family has “made it public and they’ve created a call to action,” she explained.

HDSA CEO Louise Vetter (photo by Mike Nowak)

The community emerging as its own spokesperson

For older generations of Americans, songwriter-activist Guthrie symbolized HD.

In recent decades, with younger generations unacquainted with Guthrie, many in the Huntington’s community have attributed the lack of awareness about HD – ironically one of the most common of the rare diseases – to the lack of a celebrity such as Michael J. Fox in the sphere of Parkinson’s disease.

Without national opinion polling on HD, we can’t really know if this is the case.

What’s important is that more HD family members are telling their stories publicly than ever before, and HD is gaining exposure.

Like 33-year-old filmmaker-actress Marianna Palka, who revealed her HD genetic test results in an HBO film that premiered in June, Joe is emerging as a key new spokesperson for the HD cause.

Two other successful athletes – former Olympic rower Sarah Winckless and former National Hockey League player Jake Dowell – have shared their HD stories.

In June, another, award-winning film, the documentary The Huntington’s Disease Project: Removing the Mask, was released.

Networking for the cause

Joe’s advocacy is helped by the fact that professional baseball maintains a huge fan base.

Joe and his family have started a foundation, Help Cure HD, to raise money for research on deep brain stimulation (DBS) as a potential treatment for HD. (For years doctors have used DBS to treat Parkinson’s disease.) So far Help Cure HD has raised nearly $400,000.

Joe’s wife is Allie LaForce, a TV reporter for CBS Sports. In January, Allie did a feature on Bill Johnston, the public relations director of the National Football League’s San Diego Chargers, and his fight against HD. Bill’s wife Ramona, who has HD, now lives in a nursing home.

The main mover behind the smartly produced HDSA-San Diego galas, Bill has helped raise several million dollars for HDSA through those events and numerous others.

Bill uses his contacts in the upper echelons of business and pro sports to invite speakers like Joe and garner corporate sponsors such as the B. H. Gold Insurance Agency. HDSA also honored B.H. Gold President Bill Habeger with the Guthrie Award for his support of the cause.

“May these galas soon be victory galas,” Habeger told the audience.

HDSA-San Diego President Burt Brigida (left), B.H. Gold President Bill Habeger, HDSA CEO Vetter, and HDSA-San Diego immediate past president George Essig (photo by Mike Nowak)

From the heart, emboldening our community

As they arrived at the gala, I introduced myself to Joe, Lee, Joe’s father Mike, and Tim Mead, the Angels’ vice president for communications.

I told Joe that I was also from Ohio, that my mother had died of HD, and that I carried the genetic defect. I told him that he could rely on the San Diego chapter, HDSA, and me for anything he and his family might need in the struggle against HD.

Lee and I shared a few words about our common Cleveland connection. When she mentioned that she was 56, I said I was right there with her at 55.

At 56, my own mother had the involuntary movements typical in HD and was starting to lose her ability to reason.

Joe (left), Lee, and Mike Smith with Tim Mead, vice president for communications, Los Angeles Angels (photo by Gene Veritas)

I thought of how lucky I was to remain asymptomatic and participate fully in the gala.

After his speech, Joe asked my opinion.

“You hit it right on the mark,” I said. “You spoke from the heart.”

Later, just before the end of the gala, I spoke again with Joe. “We are brothers in this cause,” I said, putting my arm around his shoulder.

Joe raised awareness and money, but most importantly he has emboldened our fellow HD brothers and sisters to join the fight. Having every dime in the world won't bring treatments unless we have enough participants in the all-crucial research studies and clinical trials.

Joe Smith (left) and Gene Veritas (photo by Mike Nowak). Watch more videos of the gala by clicking here.