Huntington's disease and the perils of adoption

Because Huntington’s disease is inherited, its sudden appearance can send family relationships into a state of shock.

Many HD families can trace the disease back over generations, but in some, like mine, it appears unexpectedly.

Adoption of gene-carrying children generates another kind of surprise for both the unknowing adoptive parents and the adoptee.

The story of four HD-stricken daughters born to Dianne M. Travers, who died of HD in 2010, reveals the almost surreal perils of adoption when HD is involved. Their story also highlights how genetic testing, increasingly common in the biotechnological era, can open up unexpected and disturbing doors.

Figuring out a puzzle

The story of these women came to light because one of the sisters, an adopted child who is today the 47-year-old Lisa Davenport Boudreau, in March 2012 discovered the identity of her birth mother after an 18-year search.

An Army combat veteran, Lisa commenced her search at the age of 30 in 1995 after retiring from the service on disability resulting from post-traumatic stress disorder.

Lisa Boudreau during Army days (personal photo)

“It was like a puzzle, putting a little piece together at a time,” Lisa told me in a series of recent interviews from her home in Wilmington, NC. She and her sisters were willing to share their both exhilarating and painful story in an effort to raise consciousness about both the tragedy of HD and the challenges of adoption.

Lisa’s adoptive parents had told her that they raised her in a closed adoption, which withholds the identity of the birth parents. Knowing her parents would be reluctant to help, Lisa at first proceeded on her own, without knowing the name of the agency that had handled her adoption.

Acting like an investigative reporter, she sought her roots by compiling a list of women who’d gotten pregnant around the time of her birth in 1965 in Fargo, ND. She also looked for Fargo babies born that year and poured over census reports and microfiche of area newspapers, hoping somehow to find a scrap of news about her entrance into the world.

In 2007, with her four children from two previous marriages old enough to allow her more free time, Lisa devoted herself to the task full time. She first contracted a private investigative firm specializing in assistance to adoptees. Despite paying a $2,000 fee, she got no results.

Lisa was finally able to obtain from her adoptive mother the name of the agency that had handled her case, Catholic Charities of North Dakota, to which Lisa paid $500 in fees for a document certifying her nationality and birth weight and for the agency to begin a search for her birth mother. This crucial step allowed Lisa to intensify her search.

As Lisa explained, since the 1960s adoption laws have changed to make it easier for adopted children to find their biological parents. “A lot of adoptees want answers,” she said.

However, Catholic Charities delayed in obtaining results, Lisa said.

“I had to have someone put a fire under (their social worker), because in three years they did absolutely nothing,” she explained. “And then, all of a sudden, when I told them I would sue them, in a month they found my mother. I really think Catholic Charities is using the adoption industry to make money.”

Catholic Charities told her Lisa that she had no siblings. To this day, she has still not obtained a copy of her birth certificate, which remains sealed in an archive in Fargo.

An identity – and a disease

“Towards the last year of looking for mom, there was something in my gut,” Lisa recalled. “For the last three months, I didn’t sleep two hours a night. I knew something was wrong. I could feel her pain, even though I never met her.”

Finally, on February 27, 2012, Lisa received a call from a social worker at Catholic Charities who had been able to track down her birth mother.

What came next was not just the joyful revelation of her biological mother’s identity, but also the shocking news that would instantly transform the lives of Lisa, her husband Bob, her children, and the relatives she had yet to discover.

Lisa learned from the social worker that her mother Dianne had recently spent seven years in a nursing home and had died of a disease of which she had never heard: Huntington’s.

“After the call, I got on my laptop,” Lisa remembered. “I pulled it up online and read it to my husband and said, ‘what is this?!’ It was very shocking. Then I had to tell my kids. It was very emotional.”

Searching for roots

In piecing together her and her mother’s past, Lisa would learn that Dianne, a Native American, had gotten pregnant with her at the age of 16. Later in life, Dianne became an alcoholic and a bit of a drifter, spending time in California, Utah, and North Dakota. When HD killed Dianne in November 2010, she was 62.

Dianne Travers (family photo)

“I missed her by one year,” Lisa said regretfully of her quest to meet her mother.

Lisa would also discover the identity of her birth father, Byron Johnson, an artist and architect of Norwegian descent. He had died at the age of 52 in 1993 after falling off a roof in a work accident.

Yet Lisa’s burning desire to know about her mother’s life only grew. She tracked down Dianne’s second husband, 96-year-old Jim Travers, who recalled that his wife had had a daughter. Lisa discovered both a birth certificate and a death certificate for this woman, Sabrina Del Rio, her half-sister, deceased at the age of 31 in 2003.

Querying the nursing home where Dianne had spent her last years, Lisa learned that a California woman named Donna Scott had handled her mother’s funeral arrangements.

Lisa set out to call every Donna Scott in California phone directories. She said she made about 3,000 calls.

“I was searching for someone who knew my mother and might be able to tell me about her,” Lisa explained.

Lisa also wondered if she might have more siblings.

On March 5, 2012, a Donna Scott in Los Angeles received a message from Lisa. Donna phoned her sister Lisa Hein in Alpine, near San Diego, to discuss the mysterious caller who claimed she might be a sister.

Opening up ‘a rattlesnake’s nest’

Despite her suspicions, Lisa B. was no less shocked by what ensued.

Returning the phone call for herself and Donna, Lisa Hein revealed that Dianne Travers was their mother. Both she and Donna were Lisa Boudreau’s half-sisters. Their father was Dianne’s first husband.

“I’m 47, jumping up and down on my bed, when I got the call from Lisa!” Lisa B. said. “My husband looked at me like I was kooky.”

Lisa B. spoke to each sister in separate calls. It did not take long for them to broach the subject of HD. The two California sisters recalled their mother’s struggle with HD. They also explained why their sister Sabrina had died so young: she had juvenile HD.

Sadly, the two sisters also revealed that they, too, were in the early stages of HD.

“How crazy that her name is Lisa!” Lisa H. told me. “We talked for hours that night, till 4 in the morning California time.”

Lisa H., a nurse, spoke enthusiastically about the joy of connection moment but also felt “a giant pit in my stomach” because of the “rattlesnake’s nest” of Huntington’s that she and Donna presented to their sister.

“It was bittersweet,” recalled Donna, who that same day had left her job as an insurance underwriter because of her disability resulting from HD. “We spoke for almost five hours that night. I have the message (from Lisa B.) saved. I will never get rid of it. She said, ‘I think we’re sisters.’

“We found her on adoption sites and Facebook sites. We said, ‘holy cow, she looks like our mother!’ You never know what a person is reaching out for.”

Donna Scott (left), Lisa Boudreau, and Lisa Hein (family photo)

In May, Lisa B. visited her sisters in California. In July, Donna spent two weeks with Lisa B. in North Carolina.

“When we met, it was incredible,” said Lisa B. “We looked at each other and touched each other and poked at each other. Back at the house we took our shoes off and looked at toes and fingers. We all had the same kind of birthmark on our leg. They both were upset at me because I have no wrinkles, and they have more wrinkles than I, and I’m older. They were upset that I had no gray hair, and they did.”

Their mother’s story

Lisa B. was finally learning about the mother and the family she had always wondered about.

Donna, Lisa H., and Sabrina were raised by their father Salvador Del Rio, who divorced Dianne and remarried. Whereas Lisa B. had spent her life up to March 2012 without knowledge of her sisters, Lisa H. and Donna had known since they were children that somewhere they had another sister, beyond Sabrina.

But nobody yet knew that Dianne’s father had died of HD, nor that she, too, was at risk for the disease.

Donna, who spent her summers as a teenager with Dianne and Jim Travers in Utah, talked with her mother about the daughter she put up for adoption. Later, in the late 1980s, when Dianne entered a rehab facility for alcoholics, she wrote a mini-autobiography as part of her therapy.

Reading her mother’s writing, Lisa H. understood that “it destroyed her and broke her heart” to give up Lisa B.

Lisa H. was excited about getting to know her mother better and reconnecting with her lost sister. In the hopes of finding the adoptee, she planned to have Catholic Charities send a letter to Lisa B.

Dianne, too, seemed ready for a new life. Around 1988 or 1989, she finished rehab in Utah. She took a plane to San Diego, with a connection in Las Vegas.

But at the Las Vegas airport, Dianne started to drink. She missed her connection and never made it to California.

Crestfallen, Lisa H. didn’t mail the letter that might have reached Lisa B. She didn’t want her to know that her mother was an alcoholic.

Although Donna had earlier enjoyed spending the summers with her mother, she said that Dianne became “a very mean alcoholic.” In the early 1990s, Donna cut herself off from her mother to protect herself, her son, and her husband.

Dianne was diagnosed with HD in the late 1990s. In Donna’s thinking, the alcoholism could have been both a cause and effect of the HD.

Sabrina’s short life

As Dianne exited her daughters’ lives in the 1990s, and with the family still unaware of HD, Donna and Lisa H. became increasingly worried about their younger sister Sabrina’s health and behavior.

“Looking back now, we see that Sabrina had the symptoms during juvenile years,” Donna said. “She was a dork and klutz in high school. We would call her ‘clumsy.’ She spoke with a slur. But in fact it was the HD. She started acting differently.”

In her 20s, Sabrina frequently forgot to pay her bills, and she neglected to deposit checks. Her car was repossessed for failure to make loan payments.

Lisa H., who has a substantial background in neurological research,  paid special attention to Sabrina’s symptoms.

When Sabrina could no longer function normally, Lisa H. and her husband Andrew tried to discover the cause of her difficulties.

Sabrina Del Rio (family photo)

“She came to visit us one day in San Diego,” said Lisa H. “It was late 1998. She had had ten accidents and totaled like three cars in the two years before that. I would call her house and the line was dead. Sabrina said the was power out in her neighborhood.”

In fact, Sabrina’s phone had been disconnected for failure to pay her bill.

“She was walking staggering in front of us. Andrew said, ‘There’s something so wrong with her.’” Lisa. H said. “I sat there and watched her walk: ‘Oh my gosh, she has a brain tumor!’

“I had just gotten married, and Sabrina got sick six months later,” Lisa H. continued. “She was sleeping on our couch and trying to figure out what was wrong with her. She had severe depression and anxiety. She had trouble at work.”

Sabrina left her job in Los Angeles to move in with the couple. In 1999, Sabrina tested positive for the HD gene. She was in her mid-20s.

“Lisa, nobody’s ever going to marry me like this,” Sabrina told her sister as she cried after receiving her test results. According to Lisa H., it was the only time she shed tears about her condition.

“I looked at my husband and said, ‘I’m going to have to take care of her. She’s my child. I release you. Go and get married,’” Lisa H. said. “And he said, ‘Nope, we’re going to do this together.’”

Within six months Sabrina was in a wheelchair. A year and half later, she became bed-ridden.

“Andrew and I did it 24/7,” Lisa H. recalled. “We staggered ourselves to take care of her.

“She never complained. She always had a smile and was thankful. She handled it all very graciously. A lot of times people get bad tempers and are grumpy. She stayed her sweet self. She was very grateful. She went into the wheelchair, and said, ‘Oh, what a pretty wheelchair.’”

Sabrina died in 2003, just 31.

Struggling with symptoms

Today the three remaining sisters struggle with the early symptoms of HD.

Donna has battled the depression and anxiety caused by HD. Sometimes she goes more than a day without sleep.

“I’m a very, very patient person,” said Donna, who is 46 and whose adult son is at risk for HD. “For that to change in my character, it blows me away. That’s not me. I’m not one to fight.

 “I’m living moment by moment right. I honestly don’t look into the long-term future, because I know it’s not there for me.”

Donna Scott (personal photo)

Like Donna, Lisa H. had to leave her job, where she was “triple- and quadruple-checking” herself to avoid making mistakes.

“I feel like I have a lot of difficulties with memory and organization,” said Lisa H., who is 43 and the mother of two adopted boys, whom she devotedly shuttles back and forth to school and baseball and football practices. “Everything seems like it takes me so long. I can’t even remember my nursing school graduation.

“It’s funny how your desire to have kids is so strong and crazy. Now that they’re here it makes me sadder and makes the disease harder because I wonder what I’ve done to them. We’re so happy but I don’t want them to have to see me like my sister was and spend their lives caring for me. I said to Andrew, ‘We can do this, but I want your focus to be them and not me.’ I was 100 percent fine having me go someplace when it starts to affect the kids.”

A passion for helping others

Lisa B. decided to test for HD. She felt compelled to help her four children map out their lives regarding the disease and family planning. In May 2012, her results came back positive.

“I was getting on the plane to California, with my paperwork,” Lisa B. said. “I didn’t tell my husband the results. The first people I told were my two sisters. I handed them my results after we had lunch. Back home, I told my husband. We cried and cried. I didn’t know about HD, but my sisters watched it happen. If I had found out younger, I wouldn’t have been able to handle it so well.”

Lisa believes she has experienced early symptoms such as depression, but also thinks her perceived behavioral issues could result from the post-traumatic stress disorder and gunshot wound to the head she suffered while in the Army.

“I’ve survived so much with the military,” she commented. “I’m not going to let this bring me down. It’s your attitude.”

Lisa Boudreau (personal photo)

Lisa B. has fought back by becoming an HD advocate. On January 7, she led the very first meeting of the Wilmington-area HD support group that she founded.

Another of her passions is to help reform adoption laws so that adoptees have greater access to information about birth families and are informed of potential health risks.

 “A felon has more rights to their documentation than I have as an adoptee,” Lisa B. observed.

Finding her family has brought her “inner peace,” she added. “It’s a very powerful feeling to finally feel that you’re part of something.”

However, she also recognizes that this knowledge is a two-edged sword.

“I love the family I’ve found, but now I have to carry the burden of knowing about Huntington’s and helping people understand how to handle this information,” Lisa B. explained. “I also did find my 84 year old grandmother who was married to the grandfather who had it, who passed it on to my mom.”

Thus Lisa B. is attempting to track down the many newfound aunts, uncles, cousins, and other relatives who are at risk for inheriting the HD gene.

“My grandfather had 15 more kids, the granddad who died of HD,” Lisa B. continued. “Four of my birth family uncles were incarcerated. I’m in the process of making a list and contacting these people. My aunt tells me, ‘You came back and stirred the pot.’ You have to have a tough skin when you take approaches like this.”

Any day now, Lisa B. expects to receive a package sent by her grandmother containing a painting Byron did of Dianne pregnant.

“Something that both my father and my mother touched would be incredible for me, for someone who never had my mother or saw my mother or touched her,” Lisa B. said. “If someone offered me a million dollars for that picture, I would say no.”

Throughout her quest, Lisa has had to juggle her desires with her relationship with her adoptive mother, Meredith Davenport. (Her adoptive father, Ed Meredith, died in the late 1990s.)

Meredith Davenport (left) and Lisa Boudreau (family photo)

“She wasn’t too on board with me looking,” Lisa B. said. “And I didn’t want to step on her toes. I waited until our relationship was strong enough. I wanted to look, but it affected so many people. It’s very hard mixing all these people together.”

Lisa kept Meredith “in the loop” throughout her search, she said. Meredith became upset when she learned of her daughter’s risk for Huntington’s disease, she added.

Above all, Lisa B. worries about her own children, all in their late teens or early twenties. They now face their own decisions about testing for HD.

“I told them, “You need to have this information,’” Lisa B. said of their newly revealed at-risk status. “‘Knowledge is power. You have the information I didn’t have when I was adopted.’ It’s a very personal decision. They need to make it on their own what they want to do with the knowledge they have.”

SuperTerry destroys the evil monster Huntington’s disease

Fifteen-year-old San Diegan Terry Leach wants to destroy Huntington’s disease, the condition that has devastated him since his toddler years and threatens to take his life very soon.

Terry’s story deeply moved San Diego artist Lee Ellingson to imagine a different outcome. In Lee’s Superman-like comic-book-style rendition (below), Terry has overcome HD by becoming “SuperTerry.” SuperTerry knocks out Huntington’s and saves the world from the ravages of the deadly disease that afflicts an estimated 30,000 Americans and could devastate as many as 250,000 more Americans who live at risk.

SuperTerry is vigorous, powerful, and triumphant. He beams with the joy of restored health and newfound happiness that the real-life Terry – along with every other victim of HD and juvenile HD – hopes for as scientists seek effective treatments and a cure.

“Wouldn’t it be great if this Huntington’s disease was like some kind of monster and Terry had super powers and could defeat the monster?” Lee told me in an interview. “That was my idea. It just kills me that a kid like Terry can have a disease like this at such a young age.”

Lee recently learned of Terry because of his own son Arnold’s struggle to live. Terry and Arnold attend the same after-school care program for disabled children and teens.

Arnold, who turns 13 later this month, was born hydrocephalic, a condition once known as “water on the brain.” He had an emergency operation immediately after birth to insert a shunt that drains fluid from the brain. He has had 23 more operations to adjust the shunt. Arnold also has autism and cerebral palsy.

Although Lee has made drawings for Arnold, SuperTerry is his very first piece illustrating a disease. He was shocked to learn that HD can affect children.

“He’s aware of what’s going on, but his body doesn’t do what it should be doing,” Lee, whose work includes background layout for the 1990s TV series Attack of the Killer Tomatoes and pieces for the San Diego Museum of Natural History, said of Terry. “That’s what’s especially heartbreaking for me. He’s a normal 15-year-old kid inside.”

Lee imagined the monster by thinking of the horrors of HD.

“He’s kind of like a blob,” Lee said. “He’s transparent and green. Slimy! I just wanted him to look real mean.

“I’ve always been pretty religious, but seeing all these kids really tests your faith,” Lee continued. “Kids like Terry and Arnold are the closest things on earth to an angel. Terry will never steal or cheat or rob or hurt anyone.”

Lee made the illustration based on photographs. On August 2 the two met in person for the first time at a fundraising event for the San Diego Chapter of the Huntington’s Disease Society of America (HDSA-San Diego). Lee presented Terry with the illustration.

“Terry was very appreciative of the picture,” his mother Angela told me. “He liked it a lot.”

Lee Ellingson (left) and Terry Leach

A feeding tube, operations, and looming death

SuperTerry HD treatments are needed now.

HD patients constantly struggle to maintain weight because they burn large amounts of calories and suffer from severely hampered swallowing. In 2010, in an end-of-life measure, the real Terry started taking meals and water through a feeding tube connected several times each day to a surgically produced hole in his abdomen. Before the operation, he weighed only 67 pounds. He now weighs 100, enough to help extend his life but still way below the average of 126 pounds for a 15-year-old male.

Terry’s body reacts to the hole as if it were an ulcer, causing him to produce large amounts of saliva that he wipes away with a towel constantly at hand. Doctors will inject botox into his salivary glands to diminish their output. He’s also gotten botox in his arms and legs to relieve pain.

Terry has undergone leg and foot operations to further relieve pain and tightness, correct deformities, and allow him, with assistance, to occasionally leave his wheelchair and walk. (For further background on Terry, please click here and here.)

Terry 

Because he can’t talk, Terry partially communicates through a language program on his iPad, which allows him to interact with people as the device’s speaker pronounces words and phrases that he selects. He takes regular classes at Madison High School, where he is starting tenth grade. Last fall he made the honor roll by carrying a grade-point average of at least 3.5. In middle school he received a number of other awards.

Terry loves computer games. During my visit to the Leach household, he played Club Penguin while I spoke to his mother for 90 minutes.

 “He’s always happy,” said Angela, a single parent who depends on Medi-Cal and other programs for financial assistance and, when she misses work because of Terry’s medical appointments and crises, the generosity of her employer, the San Diego Convention and Visitors Bureau. “He’s always wanting to give me a hug. And he’s so strong. He deals with everything and never quits fighting. He never complains, either. He’s always wanting to help. Everybody that knows Terry sees the light within him.”

However, Angela knows that, unless treatments become available very soon, Terry will die of HD. Recently a cousin of Terry’s with juvenile HD died at the age of 23. Other juvenile HD patients die in their teens or even childhood.

Angela Leach with the original drawing of SuperTerry (photo by Gene Veritas)

Raising awareness, saving the children

Knowing how little time remains for Terry, both Angela and Lee want to use SuperTerry to raise funds for HD research and increase awareness about HD and the difficult issues surrounding it.

Lee plans to expand SuperTerry into a comic strip and perhaps even a graphic novel about HD. Angela hopes to sell SuperTerry t-shirts in collaboration with HDSA.

“I don’t want any fame or glory,” Lee said. “I just want to help raise money. I want Terry to be the star.” As research progresses, science will also find ways to cure other diseases, too, he added. Such research could also benefit Arnold.

Above, San Diego Chargers football stars Philip Rivers (left rear) and Antonio Gates with Arnold Ellingson (left foreground) and Terry at HDSA-San Diego fundraiser in spring 2012. Below, friends Arnold and Terry enjoy Disneyland together.

Angela hopes that her and Lee’s efforts will help inform HD families about the option of genetic testing so that couples can avoid passing the disease onto their children through the use of preimplantation genetic diagnosis (PGD) or in the event of pregnancy – and depending on the couple’s personal and religious beliefs – early termination of the pregnancy. She wants SuperTerry to “save the children” from HD.

“I would never want another mother to go through what I did,” explained Angela, whose husband at the time (now an HD patient living in a nursing home in Indiana) did not tell her about the disease in his family until after Terry was born and the husband himself developed symptoms. HD families need to “get more proactive” about testing and family planning, she added.

“Terry’s life shows you what you face if you take a chance” by conceiving without all of the information, genetic counseling, and other resources available to HD families, she said.

“It would be best to be proactive to minimize that situation,” Angela continued. “It’s a lifelong situation. I’ve watched Terry grow up and deteriorate. There are so many challenges. We’re forever fighting.

“I don’t want his life to be in vain,” she concluded, recalling how an old friend’s son who had been in baby photos with Terry was now an imposing teenage football player. “I was happy for her, but it broke my heart. That could have been Terry. He could have been a football player. Or at least talk.”

To strive or to chill? Seeking balance in the fight against Huntington’s disease

In late 1995, after I received the shocking news that my mother had Huntington’s disease, I decided to fight back for her by learning all that I could about this incurable disorder and also advocating for treatments and a cure.

Then, after testing positive for the HD gene in 1999, I sought to save myself by finding ways to stimulate my brain in order to stave off the inevitable neurological symptoms.

As I worked to maintain my health, my HD activism grew into a full, second career parallel to my professional work, and complicating my life as a husband and father.

Two views, two necessities

“Keep striving,” a close friend wrote recently after reading one of the articles in this blog, which, for seven years, has served as a chronicle of both my advocacy and strategies for avoiding HD and, in and of itself, has provided an escape valve for my frequent anxiety about the onset of symptoms (click here to read more).

I am living a very complex paradox. I must strive, but as I do, I also must avoid allowing my activism to exhaust me physically and emotionally.

As I wrote last year, I walk an HD tightrope that requires me to very judiciously balance all aspects of my life. One slip, and I could fall off the wire and plunge to disaster.

The past year has proved exhilarating but also psychologically trying, beginning with a major coming-out speech before world-renowned HD scientists last February and ending with wrenching articles about HD and suicide, abortion, and the deaths of two girls from juvenile HD.

“You need to chill more,” another close friend of 32 years has counseled me repeatedly throughout my journey with HD.

He recommends that I “chill” as an antidote to the striving. He recommends spending less time on work, writing, and the HD movement and more on the simple, relaxing things that I could enjoy: good food and wine, books, movies, conversation with friends, walks with the dog – or just plain doing nothing.

To strive or to chill? That’s the question I face each day.

The rhythm of life

In a memorable sermon during my college years, the pastor of St. Thomas More Chapel at Yale, Father Richard Russell, spoke of the need to “get into the rhythm of life.”

As an HD activist, I especially feel that need. When I achieve that rhythm, my existence feels like the alternating phases of the heart’s cycle – pumping and relaxing over and over again.

Over the past day, that’s exactly how I’ve approached HD and the rest of my life.

This past Saturday afternoon, my wife, our 11-year-old daughter, and I took an hour-long walk in the San Diego beach community of Pacific Beach. Couples and families like us strolled, while more adventurous people on bikes or roller skates weaved in and out. The 70-degree sun bathed us all. We dined on Greek fare at our favorite restaurant, followed by frozen yogurt.

Late at night I worked on this article. This weekend, I had consciously chosen not to write on a difficult topic. I wanted to “chill.”

While I wrote, I couldn’t forget how during the previous night I chatted on Facebook for an hour, trying to help a person recently shocked by the revelation of HD in her large, extended family.

Last night I turned off the computer without finishing the article. I read for a while before turning in.

This morning, I walked door-to-door with my daughter as she sold Girl Scout cookies in the neighborhood.

What a great feeling! Watching her take charge of the sales, I recognized how much more mature and confident she has become.

I forgot not only about HD, but all my other cares.

Now, after lunch, I sit again at the computer, contemplating how I must stay in the rhythm and find the right balance between striving and chilling.

Enjoying the ride

It’s nerve-wracking to wait and wonder when and how the individual symptoms will start, especially because, at 52, I have reached the age at which my mother had already developed symptoms.

I sometimes become impatient about the rate of progress towards treatments and a potential cure.

Sometimes my fear provokes megalomaniacal thoughts about striving against HD, as if I’m a lone knight battling a fire-breathing dragon.

Then I remind myself that I cannot singlehandedly defeat this disease.

We all must get into the rhythm together: patients, asymptomatic gene-positive individuals like me, caregivers, physicians, and researchers.

And we all need to take a break from striving in order to chill.

As one of my California HD Facebook friends likes to say: when matters get rough, “go surfing!”

I don’t surf, but the thought of the power, immensity, and majesty of the ocean brings home the point: I control only a very small part of my destiny, and I might as well enjoy my ride on earth.

An HD Thanksgiving toast

Thanksgiving is my favorite holiday.

Just when the year threatens to become frenetic, Thanksgiving intervenes with a hearty feast and family warmth.

When I was about twelve, I wrote a letter to my aunt Claralou praising her for the peaceful and welcoming atmosphere of her annual Thanksgiving celebration. She displayed my letter on her refrigerator door, and it appeared there again year after year as a remembrance of the true spirit of Thanksgiving.

My mother helped her and the other women with the turkey roasting in the oven for what seemed like forever, while my father, my uncle, and the other men drank beer, talked, and tended to us eight cousins stuffed into the house.

Nobody was a smoker, but on Thanksgiving my dad and my uncle would light up cigars and smell up the den where the football classics were playing on TV and I tried to learn how to use a nutcracker. One year they let us try a few puffs. I felt cool and manly.

Thanksgiving put the brakes on schoolwork, and, in college, when I spent the holiday on the East Coast, it saved me from completely exhausting myself.

I also like Thanksgiving because, of all the holidays, it has resisted commercialization the most. Aside from a trip to the supermarket for dinner items, the urge to buy is absent. (Black Friday is definitely not about Thanksgiving, but Christmas.)

Now in her 80s, Aunt Claralou still celebrates Thanksgiving in the same home, but, living in California with my own family, I haven’t had the chance to spend the holiday there.

My parents are gone – my mother the victim of Huntington’s disease in 2006 at the age of 68, my father, the “HD warrior,” dead at nearly 82 from a broken heart a little more than two years ago.

Ever since we learned of my mother’s diagnosis the day after Christmas in 1995, Thanksgiving has taken on a more profound meaning. For me, it really is a time to take stock of all the good in my life – even though I have lived in wait and dread of HD after testing positive in 1999.

Despite the enormous worries about our future, my family and I are thriving. My wife continues to work full-time as a teacher. Last weekend she ran her sixth half-marathon since taking up running in early 2010. Our “miracle baby,” who tested negative in the womb, is performing well in sixth grade and preparing to take the private-school entrance exam. And, as I look to my 52nd birthday in less than two months, an age at which HD had already stricken my mother, I have displayed none of the classic symptoms of HD.

Along with my wife and daughter, I have experienced the simplest yet profoundest joys of life (click here to read more). Last Saturday our daughter played her last soccer game of the season. As she played one of her best games, I doubled on the sidelines as the assistant coach and team videographer, and my wife cheered them on and made sure the half-time snacks were ready. Later in the afternoon we attended the year-end party, where I was moved by the girls’ unity and laughter and the realization that we parents were a team just as united in our devotion to our daughters.

I feel a special debt of gratitude to the many people engaged in the fight against HD: the members and administrators of the four organizations combating the disease; the HD people and their families fighting the good fight each day; the physicians and caregivers; and the scientists and pharmaceutical companies on a quest for treatments and a cure.

I am continually moved by the circle of close friends who pray for and support for me in numerous ways – especially Norman Oder, the editor of this blog and my “HD alter ego.”

I also want to thank you, my readers, for sharing with me the harrowing odyssey of living gene-positive for a condition described as “the devil of all diseases.” In posted comments, on Facebook, through e-mail, and even in phone calls, you have expressed your unflagging support for me personally and confidence in our collective fight to defeat HD.

Knowing that you are listening, challenging, and cheering me on provides me with an immense emotional strength, and hearing about your valiant efforts against HD inspires me.

As I share both a ham and turkey with our guests on Thursday, I’ll raise a toast of thanks to you.

Waiting for symptoms: How long can I hang on?

As someone who is gene-positive for Huntington’s disease, I live in an uncharted gray zone as I await the onset of the same kind of devastating symptoms that took my mother’s life in 2006.

My gray zone had a precise beginning: on June 7, 1999, I received the results of my genetic test, which showed that I had inherited the abnormal HD gene from my mother.

However, I don’t know the point where the gray zone ends and a much darker fate awaits. Although the onset of this 100% genetic condition is inevitable, its exact timing and manner are not precisely predictable.

So I play the terrible “waiting game,” wondering and worrying about onset and the impact it will have on my job, my family, and my health.

Increasingly, I ask myself the question: “How long can I hang on?”

So far, no classic symptoms

My mother’s initial, psychiatric symptoms, such as emotional upset, probably started in her late forties. By the age of 55, and most likely earlier, she had chorea, the shaking and trembling movements typical of this brain disorder, in her case first evident in her legs while lying in bed at night, then affecting her hands and head. Ultimately, HD destroyed her ability to walk, talk, and think.

At the end of this year I will turn 52. All of the research on HD suggests that by now, based on the averages, I should be having symptoms.

Scientists have demonstrated that “premanifest” HD people like me suffer harmful changes in the brain ten or even more years before the start of the classic, easily observable symptoms. HD is likely attacking my brain cells already, perhaps causing subtle changes in my sense of smell or eyesight.

However, as of my last HD checkup in December 2010, I displayed none of the classic effects. As far as I can tell, I continue to live like any “normal,” healthy person.

Strategies for health

Over the years, I’ve been asked the question of how I have avoided onset. I’ve referred to a number of strategies in this past posts (for example, click here).

In brief, I exercise at least 30 minutes per day, eat a proper diet, cultivate my mind through my work as a college professor and activist for the Huntington’s Disease Society of America, consult a psychotherapist, and take medications that combat depression and anxiety and protect my brain.

I take the basic supplements – though their efficacy is still under study – recommended by the Huntington’s Disease Drug Works program: creatine, coenzyme Q-10, trehalose (a sugar), blueberry extract pills, and omega-3 fish oil pills.

I also keep in touch with a network of friends and supporters and dedicate myself to my wife and 11-year-old, HD-free daughter. I strive to deal with stress positively, and to deepen my spirituality.

Writing for this blog provides an outlet for my deepest fears and connects me to my brothers and sisters in the HD community.

A lucky man

I can’t prove that any of these strategies has actually prevented onset. It’s possible that other factors such as an undiscovered modifier gene (a gene influencing the time and manner of onset) might also be keeping me symptom-free.

But I know that none of my strategies is causing harm. For example, I undergo periodic blood tests to verify that the large amount of creatine I ingest is not harming my liver or kidneys.

A lot of what I do (or don’t do, such as heavy drinking) belongs to many healthy people’s recipe for a happy and stable life.

Whatever the reason for my delayed onset, I consider myself EXTREMELY LUCKY.

That feeling is particularly acute when I’m reminded of people my age or even younger who already have full-blown symptoms.

A ‘mild’ case?

I’ve received several messages of encouragement from readers of this blog, basically along the following lines.

You won’t get HD until you’re in your sixties.

You’ll only get a mild case of HD.

You’ll have the disease, but be able to function almost normally.

You’ll live with the disease until you’re 80 (unlike my mother, who died at 68).

I often think of my HD friend Julie, in her sixties, who’s lived with HD symptoms for a number of years but can still write eloquently and speak to me on the phone.

“You need to be like Julie,” my wife tells me with hope and conviction.

But I also know that HD could attack forcefully, turning me into a mere shadow of myself and leaving me completely dependent on my wife, daughter, and others for the most basic of necessities.

As my wife pointed out not long ago, a man’s fifties seem to carry the greatest risks for his health. (My father, for instance, suffered a heart attack at the age of 54.) I feel that if I can get to sixty with few or no symptoms, I might indeed get only a mild case of HD. And, by then, treatments should be available.

A precious gift

Each moment without HD symptoms is a precious gift.

A gift that allows me to help coach my daughter’s soccer team.

A gift that lets me to enjoy a movie or a good book.

A gift that allows me to invite my wife out to dinner and afterwards take her on a relaxing drive.

A gift that gives me the time to prepare for the future and be thankful for all that I have.

And then I worry: what will the doctor say in a couple months after my next HD annual checkup?

I am hanging on. For how long, I don’t know. But while I am, I intend to make every moment count.

That’s when I recognize another facet of the gift: the opportunity to help other HD families in need and join with them and researchers in the search for treatments and a cure.

(For the latest on HD research in the wake of the 2011 World Congress on Huntington’s disease, please visit www.HDBuzz.net.)

Huntington’s support group: seeking solidarity, fighting denial

As I live at risk for Huntington’s disease, one of the toughest things for me is to attend the local support group.

I began attending the San Diego group in January 1996, a few weeks after learning of my mother’s diagnosis for HD and the fact that I had a 50-50 chance of inheriting the disease.

At the monthly meetings, my wife and I always saw people afflicted with various stages of HD.

From those very first meetings, I remember one man, probably in his early forties, whose body moved uncontrollably the entire meeting. He was sitting in front of us, and he kept shifting in his chair and lifting it up and down, causing it to move back towards us.

He and I later had a phone conversation. He could still talk, but he spoke slowly and with a kind of quiet stammer, typical of many HD people, who ultimately lose the capacity to communicate. A computer programmer, he explained that he had to quit working after he was unable to finish an important project.

Seeing him and so many other HD people sent a paralyzing chill through my body. This, I knew, could be my future: shaking, unable to work, and dependent on my wife and others.

I always wanted to turn away from HD people, but there they were confronting me with their progressively listless expressions and struggles to maintain their humanity as their brains melted away.

I witnessed HD’s relentless attack on my own mother during visits back to my hometown outside of Cleveland, Ohio.

In San Diego, my wife and I always left support group feeling as if we had just departed from the wake of a loved one. The horrific symptoms of HD and the threat of an early death seemed to stalk us in the car as we drove home. It always took me a few days to feel normal and unthreatened by HD.

Protecting our privacy

But we kept going back. I needed to learn about HD in order to pass on caregiving advice to my father and sister back in Ohio, and I wanted to absorb every bit of information about how to prevent the disease from affecting me. I also knew that we had strength in numbers. Both my wife and I found comfort in sharing our fears with other members of the group, which frequently subdivided into smaller groups for the affected, the at-risk, and the caregivers.

We were regulars for several years. Even so, I was extremely guarded in sharing my most personal details. I decided to get tested (in June 1999) without airing the idea to my at-risk friends, and I told none of them about my gene-positive result. I did reveal that our daughter had tested negative in the womb (in January 2000), but provided no details about that process, including the fact that I had decided on testing mainly because we wanted to have a child.

I wanted to protect my privacy in order to avoid someone at work or in my profession finding about my situation, so my wife and I adopted a policy of secrecy.

Returning to my roots

At the time of our daughter’s birth in mid-2000 I was becoming ever more deeply involved as a board member for the local chapter of the Huntington’s Disease Society of America. Combined with our daughter’s arrival, that big life change left us little time for support group. My wife stopped attending in order to watch the baby. I attended monthly board meetings instead.

Last October, after twelve and a half years on the board, I decided to resign in order to devote time to other aspects of the HD movement. I also want to enjoy life and my family more before the inevitable symptoms start.

Now I have returned to my roots in the movement: the support group. In 2010, I began exiting the HD closet, and last month I decisively left it after delivering the keynote address to the “Super Bowl” of HD research in Palm Springs, California, and putting the speech online. The meeting was sponsored by the CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative.”

I’m looking to my fellow support group members to help me make this momentous transition in my life. And I want to support others in their travails with Huntington’s disease.

‘I am gene-positive’

I volunteered to speak before the group on February 28. The topic: “a gene-positive activist copes with the threat of HD.”

I had taken months and countless hours to prepare for my speech in Palm Springs to some 200 of the world’s leading HD researchers. I was on edge for weeks. Yet I had achieved a state of calm on the day of the event.

Not so on the day of my talk to the support group. I felt very uneasy about speaking before this much smaller and much more intimate audience of about 40 people.

“I am gene-positive for HD,” I told them very early in my talk, which repeated many of the main points of my CHDI presentation.

For the very first time, I explicitly revealed my status to the support group.

I explained how I had created the pseudonym “Gene Veritas” for this blog and was now “unmasking” Gene to reveal my real identity.

Connecting with my 'HD family'

Revealing the truth of my genes to this familiar group of people moved me profoundly. Long-time caregivers watched intently. People who had tested negative after years of fear had knowing looks on their faces. Just a few feet from me sat several people with very noticeable symptoms – but not bad enough to prevent them from attending, unlike former members of the group now in a nursing home. They understood everything I said.

These people lived in my community, and we shared so much in common in our long struggle against HD.

With great sadness, I mentioned my parents’ long fight together against Huntington’s. I recalled my mom’s death in 2006 and how my dad, the “HD warrior,” was never the same man after she died. He passed in September 2009.

Everybody understood. I felt naked as I shared my feelings and experiences, and I felt deeply connected to everybody in the room.

It was as if I were speaking to one, big extended family.

A new theme: denial

I introduced another theme that had never been so openly discussed at the support group: denial.

I pointed out that I had engaged in my own form of denial in part by keeping my gene-positive status a secret and adopting a pen name. (But I have confronted denial in this blog).

In fact, perhaps more than anything else, coming out about Huntington’s caused the discomfort I felt before, during, and after this talk. In exposing the truth to others, I could no longer hide it from myself.

The threat of HD has moved again to the forefront of my life, and for good, until an effective treatment is found.

I also spoke of the deep denial of HD in my extended family. It led my mom’s brother and his wife to tell their children that mom had “mental problems.” My sister and I no longer talk because of deep disagreements about HD and caregiving for our parents. (I told the group that she found out about HD after having her three sons and has lived the past 15 years in HD limbo, as no one in her family has been tested for the disease.)

A challenge

I told the group that the time had come for me – and for everybody else in the HD community – to take off our masks. It is time for the “faceless faces” of HD people to reveal their situation and end the stigma of Huntington’s disease, as Florida HD activist and filmmaker James Valvano has proposed in his latest project (click here to read more). (You can also find James on Facebook.)

I issued a challenge to myself and everybody in the room: we all needed to get our relatives, friends, and acquaintances involved in the HD movement.

More than ever, there is hope of an effective treatment, I told the group, summarizing some of the impressive advances reported at the CHDI meeting. Clinical trials are being planned for at least two major approaches to stopping HD at its genetic roots.

However, without involvement by the community in clinical trials, all the scientific skill and money in the world will not stop HD. The researchers need people to test their drugs for safety and efficacy.

How to combat denial

After the talk, I answered questions and posed some of my own to the group.

I wanted to know: how could we end the denial of HD in our families?

The ideas flowed. One fellow activist, who recently tested negative after years of fearing the disease, proposed that we stand with signs at high-traffic street corners telling people about HD and the need to stop it. Another participant said that we should share our experiences with denial and help one another strategize on how to combat it.

Someone else pointed out that families should ensure that “Huntington’s disease” is listed as the cause of death on their loved ones’ death certificates. Often health care workers or officials have omitted HD, further pushing the disease into the darkness.

Others pointed out that it’s important not to judge those who don’t – or won’t – join the cause. “Every HD patient is different,” said one participant.

Compassion and hope

I also wanted to know: should I try to help stop denial in my own extended family? Should I send a DVD of my CHDI speech to my sister and my uncle?

A number of people said that I definitely should, but with a cover letter explaining my situation and the disease.

Another person disagreed strongly. It was more important to seek the help of those who already showed solidarity with the cause.

Yet another said that, if someday my relatives have questions about HD, they might not seek advice from me, but from someone else in the HD community. It was important to let the relatives take the initiative.

Others expressed what might ultimately be the most important approach: to present HD as something that is not shameful, to have compassion for people like my sister, and to deliver the new message of hope made possible by the latest scientific breakthroughs.

It was time to go, but we had taken a step towards overcoming one of the biggest obstacles to the success of our cause and the discovery of effective treatments.

For me, the talk reinforced my goal of motivating people to overcome denial and join the cause.

Enjoying the life we have left

Confronting Huntington’s disease is a full-time job. Families and caregivers must constantly watch over their stricken loved ones. At-risk individuals often struggle for years over the decision to get tested. And asymptomatic gene-positive people like me wonder daily when and how the symptoms will strike.

One big lesson that at-risk and asymptomatic HD-positive people need to learn is that we all need and deserve to take a break from time to time. If not, worrying about the disease can completely consume our energies and leave us frustrated with the fact that we have given our lives over to HD.

Lately I’ve had this feeling myself. I have become overwhelmed with worry about HD and the movement to stop it.

So I decided it was time for my own break.

Preserving the candle

On October 15, I met up with Dr. Martha Nance at a reception for the Huntington Study Group (HSG) scientists participating in a research conference in San Diego. Dr. Nance is a specialist in HD and other brain disorders and regularly reads my blog. We attended Yale together in the late 1970s.

Dr. Nance pulled me aside and offered some friendly advice. “I’m not your physician,” she said with a shy and caring smile. “But your recent blogs have concerned me. Don’t feel that you have to do the blog every week. It’s okay to do less, especially because you’ve done so much. Don’t burn the candle at both ends.”

She had caught me in the midst of yet another streak of HD-related activities: working dinners, meetings, and visits to local drug-discovery companies focusing on treatments for HD. The next morning, a Saturday, I awoke early to return to the conference site to listen to HSG scientists present some of the latest research news. I didn’t get home until late afternoon.

I indeed had done a lot with the HD movement, but the fear of getting symptoms and my commitment to the movement left me feeling as if I had the world on my shoulders. Dr. Nance’s words helped remove a huge part of that burden.

Wisdom about HD and life

They also led me to ponder my next steps in the HD movement and my strategy to stave off symptoms.

I remembered how one at-risk board member of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego) resigned about the time I became involved with the chapter in the late 1990s. She had given many years to the fight, she said. Now it was time to enjoy her remaining time without symptoms.

We had that conversation before I tested positive in 1999. I remember feeling sad about her departure. We needed people like her in the fight! I couldn’t understand how she could apparently abandon a movement that might save her life.

Whenever one little voice tells me to quit, another quickly pipes up and urges me to keep going.

But now I am beginning to understand the wisdom of that former board member. She needed and deserved a break!

Nights at the computer

These feelings reached a crescendo in the days before HDSA-San Diego’s tenth annual Celebration of Hope Gala, a fundraiser supporting the local HDSA Center of Excellence for Family Services and Research and other HD programs.

I’ve helped with every one of these events, from placing copies of the chapter newsletter I edited onto each chair in the dining room to photographing and writing about the event for the newsletter and our website. One year I even had the winning bid on a great auction item: six tickets to the Macy’s Thanksgiving Day Parade in New York City.

I shared my many cross-cutting feelings about my years in the chapter with my wife, the most intimate witness to my attempts to cope with living positive for HD.

She agreed with the sentiments of Dr. Nance and that former board member.

“How many nights and weekends have you sat at the computer working on HD stuff?” she asked rhetorically. “Those were hours that you could have spent with me and our daughter. You could be exercising instead of sitting in front of the computer. That’s more important for your health.”

I didn’t regret my work, but it suddenly hit me how long I’ve been in this fight. Our daughter – the “miracle baby” who tested negative in the womb for HD – is ten. As she approaches her teens, she will need a strong and healthy father.

If I take good care of myself, I’ll have a better chance of being that father.

My wife was sitting in the bathroom, where she was drying off our dog after a bath with anti-flea shampoo. I sat down next to her to help.

“How rarely I sit down with my family in the evening to relax because of this ‘third job’ with HD!” I wrote later in my blog notes.

The blessed nap

For this year’s gala I came up with the idea to include the international spokesman for the HD cause, Charles Sabine, the Emmy Award-winning former correspondent for NBC television. Charles is HD-positive. I helped organize his part in the October 22 program and also his stimulating visit to our local support group on October 25.

While eating dinner a few nights before the gala, Charles and I exchanged strategies for avoiding symptoms. We’re both 50, so I felt an especially tight bond with him. We talked about supplements, exercise, diet, alcohol consumption, the effects of jet lag on the brain (Charles is English and passed through seven times zones to reach California), and other factors.

Charles tested positive for HD in 2005, and so far he doesn’t show any of the classic symptoms of HD. Over the past several years he has traveled widely to help raise the profile of HD, giving interviews, meeting with HD patients and their families, and speaking at research conferences and other events.

We heartily agreed that ample sleep is probably one of the best strategies for reducing stress and resting the brain. We both try to get a full night’s rest. And we try to nap daily. (By coincidence, I heard a radio report this morning stating that people who get nine hours of sleep per day have better brain performance than those who sleep fewer hours.)

“The blessed nap,” I wrote in my blog notes. “Two 50-year-old at-risk men discussing their naps. Would sound hilarious if it weren’t so dead serious.”

A big night

Speaking to the audience about the distressing experience of living HD-positive, Charles helped set the tone for the evening. One of Charles’ biggest worries is that he won’t be able to share life with his two-year-old daughter Breezy, another “miracle baby” who is negative for HD.

We also received news of great hope: the day before the gala, the California state stem-cell research agency awarded a grant of $3.8 million to Dr. Leslie Thompson of the University of California, Irvine, to investigate potential stem-cell treatments for HD. Along with HD advocates from around the state, HDSA-San Diego spearheaded the effort to make curing HD a priority of the stem-cell agency.

Later in the program I visited the table purchased by Vertex Pharmaceuticals, whose San Diego office has begun seeking possible treatments for HD. Vertex’s commitment to the gala coincided with a presentation about my family’s struggle with HD that I made at the company on September 24.

I thanked Paul Negulescu, the Vertex vice president for research and the head of the San Diego facility, and Beth Hoffman, the vice president of biology, for their commitment to HD, and I greeted all of the eight scientists seated with them. They were the largest delegation of HD scientists in the history of the event.

In addition to Vertex, dozens of other sponsors supported the event, including title sponsor Qualcomm and the presenting sponsor, the Viejas Band of Kumeyaay Indians.


Dr. Leslie M. Thompson of UC Irvine received a $3.8 million grant for HD stem-cell research.


Paul Negulescu and Beth Hoffman at the Vertex San Diego site in La Jolla (photo by Gene Veritas)

Former NFL star quarterback Phil Simms (right) coaches Englishman Charles Sabine (photo by Gene Veritas)

HD is priority: Charles (left) and CBS announcer Jim Nantz helped set the tone for the evening (photo by Gene Veritas)

The evening’s entertainment featured a fun panel discussion with CBS television’s National Football League announcers and producers, including icons Phil Simms and Jim Nantz.

Jim closed the evening with a moving recollection of his own family’s coping with his father’s struggle with Alzheimer’s disease. He reminded the audience that their support of the HD movement was their most important reason for being in the room.

Resigning from the board

As I left the dining room at the end of the evening, I knew I had done my small part to help make it a success. The final tally isn’t in yet, but once again the chapter brought in tens of thousands of dollars for the HD cause and, just as important, increased awareness about the disease.

With a deep sense of accomplishment – but also with the wisdom afforded me by Dr. Nance and that former chapter board member – I decided to resign from the board.

“I’ve put in 12 and a half years working on practically every aspect of our chapter,” I wrote the board. “Lately I have been overwhelmed with HD commitments and need to scale back. As a person who is gene-positive for HD and luckily escaped symptoms so far, I must now concentrate on maintaining my health and spending more time with my family.”

I pledged to continue as a volunteer, concentrating on this blog, articles on HD-affected individuals and families, and reports “about research developments in order to help create hope.”

Feeling more 'normal'

Instead of board meetings, I will once again attend the support group, “my roots in HDSA.” As I’ve written before, HDSA needs to rediscover its initial mission of care. Also, I personally need to care for my own health and family while I can.

I also committed to promoting the chapter “through contacts with local pharmaceutical companies, public talks, assistance to scientists, and my collaboration with CHDI,” the multi-million-dollar “cure Huntington’s disease initiative.”

I’m not abandoning the movement. Far from it.

But I’m going to focus my energies more efficiently, and more towards my family.

And, like that other former board member, on living the life that I have left without symptoms. To live, if at least for just brief moments, as if HD doesn’t exist!

“It’s nice to feel ‘normal’ once in a while!” I wrote in my blog notes a couple days after resigning. “I haven’t felt ‘normal’ for a long time – fears and militancy constantly put me on edge. Need to get off this edge from time to time.”

Progress and optimism

It’s also important for me to take stock of the progress our movement has made – evident in Dr. Thompson’s grant and the many potential treatments being identified by researchers. When my mother was first diagnosed with HD in 1995 (she died in 2006 at age 68), there were no targets!

Today there are more than 700 potential targets! Vertex and other companies and research projects may soon have drugs that reach those targets. (I’ll be blogging soon on Vertex and other research developments.)

That sense of progress gives me hope and confidence that a treatment, and perhaps even a cure, will be found in my lifetime.

“We’re not alone,” I wrote in my blog notes. “The scientific community is out there fighting.”

Of course, nobody can guarantee a treatment or cure. But at least now I can feel optimistic.

Yes, we in the HD community deserve a break, even if only occasionally. And we also need and deserve to fully experience attitudes like optimism. As short as our time may be, we all need to live – and enjoy – the life we have left.