At CHDI conference, advocates inspire acceleration of quest for Huntington’s disease therapies

 

With a record 420-plus participants, the 19th Annual Huntington’s Disease Therapeutics Conference got under way on February 26 with the aim of speeding the quest for therapies to slow, halt, or reverse the symptoms of this incurable disorder.

 

Sponsored by CHDI Foundation, Inc., the largest private funder of HD research, the event runs through February 29 at the Parker hotel in Palm Springs, CA, and will feature three days of scientific and clinical presentations.

 

“In recent years the quest for HD therapeutics that will make a real difference to affected families has accelerated and deepened,” CHDI Chief Scientific Officer Robert Pacifici, Ph.D., wrote in a welcome letter to the participants. “Accelerated in the sense that every week seems to bring new scientific insight, whether from publications or reports on new and ongoing clinical initiatives. Deepened in the sense of the sophistication of our understanding of the underlying HD biology that informs our drug development work.”

 

HD research has also “broadened,” Dr. Pacifici added, noting that participants are displaying a record 140-plus posters. Representatives from 55 pharmaceutical and biotech companies and 69 academic institutions will take part.

 

In his letter and opening remarks to the conference, Dr. Pacifici outlined how CHDI has reorganized its scientific-thematic approach to “better align” its activities “with this burgeoning body of knowledge.”

 

The conference, following such themes, will focus on new research into the roles of mutant huntingtin DNA, RNA, and protein in HD. Conference-goers also will focus on the hot topic of somatic instability, the tendency of the deleterious expansion of the DNA to worsen with age and therefore trigger disease onset.

 

A caregiver’s moving keynote and a vital TED Talk

 

Following Dr. Pacifici’s overview, the audience watched a deeply moving 80-minute keynote speech, not to be shared publicly, by Cheryl Sullivan Stavely, RN. Stavely recounted her 30-plus years as an advocate and caregiver to her late husband John and daughter Meghan, who both succumbed to HD.

 

Stavely thanked the scientists for their dedication and said she hoped that 30 years from now HD conferences will become unnecessary with the development of treatments.

 

Choking up at Stavely’s recollections of Meghan, I found the keynote highly effective in summing up the many health and social challenges faced by HD-affected people and their families such as the affected person losing the ability to work and making insurance and end-of-life arrangements.

 

Scroll to the end of this article for photos of Stavely’s presentation and others.

 

Earlier, I interviewed leading HD global advocate, Emmy Award winning television journalist, and fellow HD gene expansion carrier Charles Sabine about his compelling TED Talk “The Unlimited Capability of Every Human.” Launched on February 1, the talk already has had 4,500 views.

 

Sabine stressed the importance of making the presentation “gather viral momentum” and transform the way HD is viewed by the general public everywhere. I will explore the implications of Sabine’s vital talk in a future article.

 

Stay tuned for further coverage of the therapeutics conference. 

 

Displaying a slide of daughter Meghan, Cheryl Sullivan Stavely delivers the keynote address at the 19th HD Therapeutics Conference, February 26, 2024 (this and the photos below by Gene Veritas, aka Kenneth P. Serbin).

The audience watching Stavely's presentation

Cheryl Sullivan Stavely and husband Kevin Stavely

 

Leslie Thompson, Ph.D., of the University of California, Irvine, greeting Kevin and Cheryl Stavely

 

Stavely with Karen Anderson, M.D., of Georgetown University

 

Stavely (left) with Haiying Tang, Ph.D., of CHDI and Wenzhen Duan, M.D., Ph.D., of Johns Hopkins University
 

After another critical Huntington’s disease clinical trial proves negative, a time to embrace self-care and caregiving

 

A long-awaited clinical trial of a drug aimed at improving daily function  in the early stages of Huntington’s disease has produced negative results, Prilenia Therapeutics announced on April 25 at the American Academy of Neurology meeting in Boston.

 

According to Prilenia, the drug, pridopidine, failed to show improvement for trial participants on its primary and secondary measurements of symptoms (endpoints).

 

"Unfortunately, the failure of the PROOF-HD trial to meet its primary endpoint in preliminary analyses is a huge disappointment for the HD community,” Jody Corey-Bloom, M.D., Ph.D., the director of the Huntington’s Disease Society America (HDSA) Center of Excellence in San Diego, wrote me in an e-mail on April 25. “There was, however, some suggestion of benefit on other clinical measures, particularly a computerized assessment of motor function [a person’s movements], and I suspect we will see additional detailed analyses in the coming months.”

 

“We won’t sugar-coat this: the trial results were unfortunately negative,” the HD science site HDBuzz concluded. “The drug did not slow progression of HD as measured by the TFC [Total Functional Capacity]. Failing to meet its primary endpoint means that pridopidine will not get licensed by the FDA and other regulatory agencies.”

 

“The data obtained as part of the study remain useful and will be analyzed further for new insights they can provide,” Martha Nance, M.D., the HDSA Center of Excellence director in Minneapolis, wrote me. “We will not stop looking for better answers.”

 

Seeking a disease-modifying therapy

 

As an HD gene carrier who will inevitably develop symptoms, I had hoped to take pridopidine – if prescribed by a doctor – to help prevent or slow disease onset and maintain my daily activities. At 63, I have reached far beyond my HD-stricken mother’s onset in her late 40s. She died at 68.

 

Pridopidine would have been the first drug to potentially affect the progression of HD. Also, unlike drugs in other key trials that require spinal injection or direct injection into the brain (requiring an operation), pridopidine is a pill.

 

The news about pridopidine is the latest in a series of disappointing clinical trial news over the past two years. Last October, the highly innovative Triplet Therapeutics, Inc., had to shut down because of investor nervousness about the HD field. In December, Novartis had to end a program of developing its own pill for HD, branaplam, because of serious side effects in volunteers in a clinical trial.

 

PROOF-HD was a definitive Phase 3 trial. There are no other Phase 3 HD trials in progress for disease-modifying therapies.

 

Researchers remain hopeful that they will ultimately develop effective therapies. In January, Roche announced the start of GENERATION HD2, a second, less ambitious clinical trial of its gene-silencing drug tominersen. Other trials are in progress. This week, scientists and drug hunters focused on the cutting-edge developments at the 18th Annual HD Therapeutics Conference in Dubrovnik, Croatia (click here to read more).

 

Prilenia CEO and founder Michael Hayden, M.D., Ph.D., reporting the negative results for improvement in Total Functional Capacity in PROOF-HD participants at the HD Therapeutics Conference, April 27, 2023 (photo from HDBuzz)

 

Stepping back from advocacy

 

With the rest of the HD community, I have been riding the “clinical trial roller coaster” of emotional ups and downs in the quest for therapies.

 

I am also acutely aware of the passage of time – and that I may never get to participate in a clinical trial. GENERATION HD2, for example, restricts participation to ages 25-50. In the 30 years since the discovery of the huntingtin gene, we still have not seen a therapy to slow, stop, or reverse the disease. This month marks 25 years of my work as an HDSA volunteer advocate.

 

Recently, due to unforeseen circumstances unrelated to HD, I have had to step back from my advocacy, including this blog. My current challenges come on top of the juggling act that has characterized my fight against HD since my mother’s diagnosis in 1995 and positive test for the mutation in 1999.

 

So I have struggled to maintain my sense of meaning and purpose – crucial in slowing cognitive decline in HD. 

 

I have thus felt the need to concentrate on self-care. I believe there is wisdom in recognizing the importance of self-care – especially for someone like me facing a challenge for which science has yet to find an answer.

 

As I have learned, my first obligation is to my own health – remaining symptom-free and therefore fully available for my family, friends, and others I love and care for.

 

In this blog I have aimed for transparency about my health. For my own and the community’s benefit, I have sought to report accurately and thoughtfully on the quest for therapies, the endeavor to provide better care, and the many ramifications of HD (click here to read more).

 

Prioritizing diet, sleep, and exercise

 

So, as an advocate striving to be the best version of himself, I want to embrace self-care.

 

Last August and September, though fully vaccinated and having masked except for meals, I fought off an infection of COVID-19 caught in Boston while attending HD2022: Milton Wexler Biennial Symposium, sponsored by the HD-focused Hereditary Disease Foundation. I have been deeply concerned about COVID-19 because of the many instances of long COVID, the disease’s neurological symptoms, and the devastating impact on people in their 60s and older.

 

The pandemic has highlighted the need for self-care and caregiving.

 

To continue HD-free, I must prioritize the triad of a healthy diet, adequate sleep, and regular, vigorous exercise. I tell myself about swimming: in terms of health, “this is the most important thing you can do today.”

 

Recently, after challenges replacing my retired psychotherapist of 24 years, I began working with a new therapist – a profound form of self-care.

 

Self-care for me also includes continued participation in Enroll-HD and other HD research studies.

 

 Gene Veritas (aka Kenneth P. Serbin) swimming in his backyard pool (family photo)

 

Addressing deficits in care and caregiving

 

With the negative results from PROOF-HD and other recent trials, I am reminded of the debate and tensions over “care versus cure” that I witnessed at the start of my HDSA advocacy in the late 1990s and early 2000s. We need both. I saw my mother’s desperate need for care as HD devastated her and fought with fellow advocates to support the search for a cure.

 

As I age, and with the continued lack of effective therapies, the likelihood that I will not take a disease-modifying drug increases – as does, therefore, the likelihood that I will need caregivers. For HD gene carriers like me, improvements in caregiving will become essential.

 

As one key study has shown, serious deficits HD in care and caregiving remain, and plans for addressing this issue remain aspirational.

 

Most HD funding goes to biomedical research. Greater resources for HDSA and other patient advocacy organizations could help address the care and caregiving shortfalls.

 

Being patient and gentle with human fragility

 

Upon entering this world, we are all subject to illness, both genetic and non-genetic. The fight against HD, COVID-19, and other illnesses highlights our human fragility.

 

We are all potential caregivers and recipients of care, at various times in our lives.

 

I have found heart in the words of Pope Francis during his historic May 2017 audience with the HD community at the Vatican, which I attended with my family: “Fragility is not an ill, and disease, which is an expression of fragility, cannot and must not make us forget that in the eyes of God we are priceless. Disease can also be an opportunity for encounter, for sharing, for solidarity.”

 

As I patiently and gently await the recharging of my mental and spiritual batteries, I am mindful of my own – and others’ – fragility and the new opportunities for solidarity in achieving research progress and improved caregiving.

In this electoral season, let’s highlight our natural role as caregivers and support care professionals

In the Huntington’s disease community and many others facing debilitating diseases, caregiving is essential.

 

The COVID-19 pandemic has made the need for volunteer caregiving perhaps more apparent than at any time in recent memory. In addition, examples of “heroes” have emerged among care workers such as healthcare professionals, first responders, and other occupations.

 

In this electoral season, no matter what your political persuasion, let’s highlight people’s natural role as caregivers and support the care specialists, many of whom work for very low pay.

 

The bedrock

 

Caring for others forms the bedrock of human relationships. This frequently extends to assisting individuals with health challenges.

 

We come into the world cared for by parents and other adults. Teachers care for us and become key role models as we progress through the school system. If we attend college, professors, peers, counselors, and others provide comprehensive support.

 

Spouses and partners care for and support each other, and if one falls seriously ill, the other helps. The same often happens with siblings.

 

Just as our parents raised us, so do we often look after them in their old age. In the U.S., where extended families once took in parents and relatives, caring for the elderly has increasingly become the responsibility of assisted living facilities and nursing homes. Nevertheless, children often bear the responsibility of finding a safe, good-quality place.

 

Many developing countries (such as Brazil, the country I study) lack assisted living, putting the responsibility squarely onto families.

However, as discussed below, in the U.S. the demand for caregiving is shifting much of the responsibility back into people's homes.

 

Lessons from the Huntington’s community

 

As a Huntington’s advocate and family member, I have learned many lessons about caregiving and seeking professional assistance.

 

My “HD warrior” father Paul Serbin cared for my HD-stricken mother Carol throughout most of the 20-year course of the disease (click here to read more). She also had an in-home care worker assist her with such needs as bathing and styling her hair.

 

Spending the last months of her life in a nursing home, my mother died in 2006 at age 68.

 

Paul Serbin pushing Carol Serbin in wheelchair (photo by Gene Veritas, aka Kenneth P. Serbin)

 

And, as an HD gene carrier “racing against the genetic clock,” I know that the inevitable onset of symptoms could lead me to depend completely on my wife Regina and others for care.

 

(Two nights ago ­– perhaps in anticipation of writing this article – I had a nightmare in which a prominent leader of the HD cause told me that I had chorea, the involuntary, dance-like movements typical of the disorder. The symptoms remained throughout the dream.)

 

I have also witnessed how a mother like Angela Leach tenderly looked after her son Terry, hit with HD in the toddler years. He died at 18.

 

Demand on the rise

 

As I noted in a previous article, volunteer caregiving is a “prominent yet often unheralded human practice.”

 

I’ve also reported on how some HD-afflicted individuals face subpar institutional care, fueled by ignorance and approaching neglect.

 

The demand for both volunteer and professional caregiving will continue to increase as humans generally live longer, and as millions develop neurological disorders such as Alzheimer’s disease and others.

 

One in five is a caregiver

 

In May, the Family Caregiving division of the American Association of Retired People (AARP) and the National Alliance for Caregiving (NAC) issued the extensive report Caregiving in the U.S. 2020.

 

“Today, more than 1 in 5 Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months,” the report states. “This totals an estimated 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015.”

 

The report asserts that the number of recipients of care living with caregivers continues to rise.

 

Caregiving is also becoming more complex, because individual care recipients have an increasing number of health conditions, the report states. Caregivers also rely more on household minors for assistance.

 

According to the report, caregiver self-reported health is also declining, because of the added stresses of caregiving.

 

The report observes: “Caregivers who cannot care for themselves may become unavailable to care for others; likewise, caregivers have their own financial, health, and wellness needs, which begs the question, ‘Who will care for the caregivers?’”

 

Financial stress is also common: “In fact, caregivers’ savings are eroding, with 22 percent who used up personal short-term savings and 12 percent who used up long-term savings (for things like retirement or education).”

 

Unpaid caregivers serve as a “core piece” of the health and long-term services and supports formal care systems, “as well as the main source for long-term care for adults living at home and in the community.”

 

Supporting caregiving

 

With the AARP-NAC findings, and as we approach the November 3 election for president and other key offices, we once again should pause to reflect on a crucial question:

 

How can meet the caregiving challenge – including paying professional caregivers more, providing respite for family members, and improving the regulation and overall quality of facilities?

 

The AARP-NAC report informs that 68 percent of caregivers surveyed support an income tax credit for caregiving. A similar percentage want back pay for caregivers for some of their hours worked. More than half favor establishing the right to partially paid leaves of absence from work for caregiving.

 

The party platforms

 

For the upcoming election, the Republican Party did not develop a new platform, simply readopting the 2016 version. It does not mention “caregiving” or “caregivers.”

 

The 2020 Democratic Platform proposes Social Security reform to provide benefits to assist those who forego paid work because they are caregivers. The platform further proposes making it easier for unpaid caregivers to save for retirement.

 

In addition, the Democrats advocate expanding access to home and community-based long-term care services and supports; eliminating waiting lists for home and community-based care; and bolstering Medicaid’s capacity to fund such services. The Democrats support a tax credit for informal and family caregivers and increasing the Child and Dependent Care Tax Credit.

 

“Democrats will also pursue policies to improve nursing home staffing and quality standards, strengthen accreditation processes, and combat corporate abuses in nursing homes,” the platform states. The party also supports a “roadmap to citizenship” for undocumented caregivers.

 

Building a better society

 

The benefits desired by the surveyed caregivers and the Democrats’ policy statements bear serious consideration.

 

In my more than two decades as an HD advocate, I have heard many stories of families whose resources were depleted by caregiving costs, lost work opportunities, and the government requirement that practically all assets be spent before receiving public aid for nursing home care.

 

I believe that highlighting our common role as caregivers can benefit all of us.

 

As a nation, we must embrace caregiving and professional care work as a non-partisan issue. Perhaps in some way this could serve as an antidote to the deep political polarization that afflicts us.

 

At the very least, it can help point us in the direction of building a better society.

Passing on the Huntington’s disease advocacy baton to the next generation

In the fight against Huntington’s disease, a familial condition that can plague generations, each generation must pass on the advocacy baton to the next.

I feel as though I've started my handoff to my daughter Bianca.

HD has profoundly affected my family in multiple ways. My mother was diagnosed with HD in 1995 and died from it in 2006 at age 68. I tested positive for the genetic defect in 1999, and have been racing against the genetic clock ever since. Bianca, thankfully, tested negative in the womb in 2000.

At 57, an age when my mother had chorea (involuntary movements) and severe cognitive loss, I am blessed to have remained symptom-free. However, because HD gene carriers inevitably develop the disorder, I know that, unless scientists discover an effective treatment, I will someday become ill.

HD families must stick together to confront the devastating symptoms, caregiving demands, and difficult challenges the disease brings, but it’s by no means easy.

Avoiding the denial that prevents family solidarity and feeds ignorance about the disease, my wife Regina and I have revealed to Bianca at appropriate moments how HD has impacted our family. We have done so gradually but always honestly. Often, we spoke about HD in response to her questions. (To read more, click here and here.)

Gene Veritas (aka Kenneth P. Serbin) with daughter Bianca and wife Regina (2016 family photo)

A biology assignment

Now 16, Bianca is a healthy and vibrant high school junior. She has frequently read this blog and over the years has participated in several fundraising events for the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego).

Her gene-negative status means that the threat of HD stops with me. Of course, she is concerned about my health, and she is deeply saddened by the plight of juvenile HD patients. She has volunteered for HDSA-San Diego.

Last week she worked on an assignment for her high school biology class titled “A Day in the Life: A Study of Human Genetic Disorders.” From a list of diseases, she chose HD. Drawing on medical and scientific sources, she wrote a four-page summary of the biology of HD, symptoms, its rare status, age of onset, and potential treatments.

Life with HD

For the required creative component of the assignment, Bianca wrote an imaginary patient journal titled “Life with Huntington’s Disease,” from the perspective of this blog, her conversations with me, and her observations over the years.

Bianca captured the sadness, anger, and fear associated with HD. In one excerpt, she wrote:

Today was a bad day. It has been hard lately to ignore HD. I wish I could say I don’t think about it all the time, but I do. Especially now that Mom is getting worse. She can barely walk at this point. Dad helps her eat, shower, use the bathroom, and dress herself. It’s hard for me to see my mom act in a more childish manner than my three-year-old daughter. It’s hard for me to see my mom this way because I know that I will one day experience the same thing. I feel exceptionally lonely nowadays. I know others who struggle or who have struggled to take care of someone with HD, but I somehow feel like my situation is unique, somehow worse than everyone else’s.

However, Bianca also portrayed the strength and hope of HD families and advocates, writing:

Perhaps the best part of having HD is getting to meet so many people who are involved with the cause. The Huntington’s Disease Society of America is one of the most supportive groups of people I have ever worked with. Few know the struggle that accompanies this disease. It’s nice to be able to talk to people who do, people who have lost loved ones, as I have, to this horrible sickness, people who, like me, are at risk.

Bianca Serbin (photo by Gene Veritas)

Honesty and family solidarity

Reading Bianca’s words, I know that HD is forever seared into her consciousness.

I was deeply moved by her decision to write about our family’s struggles with Huntington’s. I am very proud of her.

The experience reinforced the necessity of accurate, patient, and, above all, honest communication within Huntington’s families.

In our conversations last week many powerful memories came to the fore. Bianca told me that one of her earliest recollections was of us visiting my parents’ home in Ohio (she was three) and seeing my father and me help my mother after she fell on the floor.

Bianca learned from me last week how the disease could potentially affect other members of our extended family.

As I looked at her, I felt an immense sense of relief that she is HD-free. I also felt wonderful anticipation: in less than a year she will be applying to college.

‘Don’t worry for now’

At the conclusion of our conversation the night before Bianca turned in the assignment, we discussed the fact that the greater the genetic defect (gene expansion), the earlier the onset.

We inevitably focused on my potential age of onset, ranging from the late forties to the late sixties.

“Hopefully I will get sick only in my late sixties,” I told Bianca.

“Or maybe you’ll get sick even later – or not at all!” Bianca responded optimistically.

We discussed the hope of clinical trials.

A bit later, determined not to let all this hinder her life plans, I told her gently: “Don’t worry about HD for now. That’s something off in the future.”

Bianca and Kenneth Serbin (family photo)

The little things that are really big: caregiving in families with Huntington’s disease

The everyday kindness of the back roads more than makes up for the agony of the headlines – Charles Kuralt

As a member of a Huntington’s disease family, I have become deeply familiar with the common yet often unheralded human practice of caregiving.

My “HD warrior” father Paul Serbin cared for my HD-stricken mother Carol for more than a decade.

My mother died ten years ago this week. Her passing sent me into a months-long dual spiral of anxiety and depression: I had inherited the HD gene from her, and seeing her demise provided a portent of my own future (click here to read more).

Because of the inevitability of HD onset, I know that I too will require caregiving.

Furthermore, as a father, I’ve spent the past fifteen years helping my wife Regina raise our daughter Bianca, a special form of caregiving. Bianca tested negative in the womb, thus avoiding the specter of juvenile Huntington’s. As we teach her to drive and begin discussions about college, our role as parents becomes both more rewarding yet more complex.

Three weeks ago, the balance shifted, as Bianca and I became temporary caregivers for Regina: she underwent an operation to repair a torn rotator cuff and must keep her right arm in a sling for at least six weeks.

Completely interdependent

Caregiving is about all of the little – but really big – things we humans do for each other.

It’s how families, hospitals, and nursing homes run.

We are completely interdependent.

As we’ve helped Regina over the past several weeks, the meaning of caregiving has become ever more clear to me.

It involves small but important tasks: bathing her, spraying on deodorant, buttoning her shirt, adjusting her sling, driving her to doctor’s and physical therapy appointments, taking over her share of car pool duties, providing assistance in the kitchen, exercising her disabled arm – these and many more tasks have highlighted for me the importance of caregiving, taught me to be more sensitive to Regina’s needs, and reminded me of what’s most important in life.

Despite a busy high school life, Bianca has helped out, too.

It’s brought us closer together.

Bianca (left), Regina, and Kenneth Serbin (aka Gene Veritas) (photo by Bianca Serbin)

Valid and important emotions

I’m certainly no saint. I’ve done my share of grumbling! And sometimes I feel overwhelmed.

As I’ve learned from news items posted on Facebook HD discussion pages, caregiving experts say it’s okay to experience feelings associated with caregiving such as anger, boredom, frustration, and impatience.

“Whether you become a caregiver gradually or all of sudden due to a crisis, or whether you are a caregiver willingly or by default, many emotions surface when you take on the job of caregiving,” a recent article at Dementia Today states. “Some of these feelings happen right away and some don’t surface until you have been caregiving for awhile. Whatever your situation, it is important to remember that you, too, are important. All of your emotions, good and bad, about caregiving are not only allowed, but valid and important.”

As another article suggests, caregivers need to face emotions directly, find healthy ways to release anger, share feelings with close friends, and take breaks to pursue enjoyment.

These recommendations can apply to short-term caregiving situations such as recovery from an operation but also to long-term situations involving HD, Alzheimer’s disease, and other afflictions.

Overlooked and undervalued

Until my mother went into a nursing home in the final months of her life, my father cared for my mother’s daily needs with the assistance of a professional caregiver who visited their home a few hours each week. He helped her in the bathroom, fed her, and pushed her wheelchair.

She was the love of his life. He was stubborn about accepting more help at home and getting her physical therapy, but each day he climbed with her into the HD trenches.

Not once did I hear him complain. Maybe he should have!

In our celebritocracy, such dedication goes unrecognized. Each year family caregivers are estimated to provide the equivalent of nearly half a trillion dollars in unpaid care.

In America, care and caregiving are “overlooked and undervalued,” writes Zachary White, Ph.D., the author of the blog The Unprepared Caregiver.

Unlike highly valued, professional jobs, informal caregiving isn’t considered a career.

“Parents and relatives and friends won’t be able to brag about your experiences.” Dr. White writes. “There are no ‘schools’ of informal caregiving – no Harvard or Stanford to use as a guiding goal from which others can respect and admire. Others may speak highly of your role and your efforts, but it begins and ends there.”

While taking care of loved ones, members of the HD and other neurological disease communities have long advocated for better caregiver assistance and nursing home care – including disease-specific instruction for health aides. These will remain daunting challenges for the foreseeable future.

Preemptive caregiving

I believe that Regina’s devotion to me and our family is a big reason why I’ve passed my mother’s age of HD onset. She helps provide for the family by working as a full-time elementary school teacher; she sees to it that Bianca and I eat healthily; and she supports my HD advocacy.

She has done a lot of preemptive caregiving.

Caring for Regina during her recovery and remembering my mother’s struggles with Huntington’s have led me to reflect on my future caregiving needs.

As I race against the genetic clock and await the development of treatments for this incurable disorder and a health care system more responsive to those with brain diseases, I want to avoid becoming a burden on my family.

By maintaining good health in the present, I can perhaps reduce that future burden.

However, I know that, for each HD family, this is uncharted territory. We can forge ahead by caring for our our family members – and for the larger community.