Showing posts with label HD Awareness Month. Show all posts
Showing posts with label HD Awareness Month. Show all posts

Sunday, May 17, 2026

For Huntington’s Disease Awareness Month, reflections on teaching about this devastating disorder at the University of San Diego

  

First proclaimed by President George H. W. Bush in 1991, Huntington’s Disease Awareness Month (May) encourages affected families to share their stories about this rare neurological disorder with the wider world.

 

For that reason, among others, I served on the board of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA) from 1998-2010. In this blog, begun in 2005, I have written articles commemorating HD Awareness Month.

 

A 2019 posting about HD Awareness Month featured a photo of me pointing to HDSA #LetsTalkAboutHD flyers posted on my office door at the University of San Diego (USD), where I teach history and research science and technology studies.

 

As a fulfillment of a long-term goal to advance both awareness-building and deepen my knowledge of HD science, in the spring semester of 2025 I inaugurated a new course, A History of the Brain: Examining Huntington’s Disease. Professors often say that the best way to learn a subject is to teach it. Student feedback is crucial in this process.

 

This month, in the third offering of the course, I distributed a flyer containing HD Awareness Month promotional material from HDSA and the Huntington’s Disease Foundation.

 

Each holding a flyer, three students – Ana-Lucia Moreno, Ava Puorro, and Mia Wilde – had a picture of me taken with them in the classroom and posted it on Wilde’s Instagram with the title “National Huntington’s Disease Awareness Month.”

 

“Best class ever with Dr. Serbin, who has Huntington’s disease and taught us so much about it in class!” they wrote on the posting.

 

They included the link to this blog. “Watch his blog to learn more about HD and how we can make all people feel included.”

 

 

From left to right, Mia Wilde, Gene Veritas (aka Kenneth P. Serbin), Ana-Lucia Moreno, and Ava Puorro in Wilde’s Instagram post about HD Awareness Month. The jacket I am wearing is much-appreciated swag from the Annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc., the biggest private funder of HD research (personal photo).

 

Keys to understanding the history of HD

 

A History of the Brain has great relevance to the present. At the outset, I acknowledge that I am not a neuroscientist but a historian, HD gene carrier, and advocate.

 

An introductory course that fulfills the history requirement in USD’s core curriculum, A History of the Brain teaches basic skills in how to interpret history. The students have a wide variety of majors and career interests, including premed, neuroscience, biotech, business, natural sciences, engineering, and the humanities. The course also counts towards a major or minor in history.

 

I lecture on the basic scientific understanding of the brain from antiquity to the present, based on the masterful book by Andrew P. Wickens, A History of the Brain: From Stone Age surgery to modern neuroscience. It helps provide an overview of humanity’s understanding of the brain in understandable terms.

 

To launch discussion about the disease, students do short writing assignments based on the course readings. They include neurologist Thomas Bird’s Can You Help Me? Inside the Turbulent World of Huntington Disease. As I stated in my review of the book, “With non-technical, limpid prose, Dr. Bird tells the full story of HD’s wide-ranging medical, socioeconomic, and legal implications through a series of poignant vignettes, based on hundreds of HD cases."

 

The students also read two classic works by prominent HD family member and historian Alice Wexler, Ph.D. In The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease, Dr. Wexler explains the deep stigma and misunderstanding about HD that developed in the nineteenth and twentieth centuries. In Mapping Fate: A Memoir of Family Risk and Genetic Research she chronicles the crucial work by her family and a myriad of scientists to discover the huntingtin gene in 1993.

 

Emotional debates and discussions

 

Many days in the course produce deeply emotional debates and discussions.

 

My students’ recognition of the need for social inclusion for all echoes the course’s deep exploration of the stigma and discrimination associated with HD, other neurological disorders, mental illness, and disabilities.

 

Those themes emerge in the books about HD and in the selection of articles from my blog included in the course readings. For its contributions in giving a voice to the HD community, last year my blog received the 11th Victor Gonzalez Santos Community Award, which supports local families in San Diego with HD. My articles, which include stories of my family’s struggles with HD, and my discussions with the students add a deeply personal element to HD and the cause to defeat it.

 

The course studies in details HD’s triad of devastating symptoms: involuntary movements, cognitive loss, and behavioral and psychiatric difficulties. We also delve into many other difficult challenges faced by the HD community, such as genetic testing, family planning, and bioethical issues like abortion and suicide. We also discuss the quest for treatments of this still incurable disorder.

 

Students see how I bared my heart in blog articles like the one about my mother’s final moments before dying from HD and the revelation that I carried the HD gene. As a result, I need to be prepared to talk in class about the most devastating aspects of the disease and the fears of experiencing them myself.

 

College classes provide an exercise in intellectual freedom and debate, with a professor being open to all views. In one class last year we intensely debated police misunderstanding and mishandling of HD-affected individuals, who are often seen as being under the influence of drugs or alcohol.

 

I introduced the students to something new for most of them: the Psychiatric Emergency Response Team, which has specialists trained to interact with and identify resources for those with behavioral health issues and who may pose a threat to themselves or others. The students concluded that this team was the appropriate alternative to calling the police in the case of HD or other disorder.

 

Invaluable insights

 

The course closes with an important religious perspective on the HD cause. We ponder the question, “how could God allow people to suffer from disease?” We examine Pope Francis’s historic audience with the HD community in 2017 and his declaration that HD should be “hidden no more!”

 

One of my projects at USD is to publish an annotated collection of about a dozen or some of my blog articles.

 

My interaction with the students and their thoughts on my blog and the HD cause will provide invaluable insights for that project.

 

A ‘very meaningful’ experience

 

The course has also underscored for me the fact that Huntington’s disease is still not a household word in the U.S. as compared to Alzheimer’s, Parkinson’s, ALS (amyotrophic lateral sclerosis), and other disorders. For most of the students, it is their first exposure to HD.

 

HD families still lack an effective therapy.

 

In a very poignant way, the course introduces young people to something we all share: mortality. Tragically, last year a vibrant and accomplished 42-year-old USD sociology professor, Greg Prieto, Ph.D., died of cancer – after offering his own reflections on facing death.

 

With A History of the Brain, I hope to have move us a bit further towards the greater awareness that the HD community still needs.

 

My students’ HD Awareness Month Instagram post is an example of the impact the course has had.

 

In an e-mail to me, Mia Wilde reported that the post had some 600 views and 100 likes, “a really great amount of engagement.”

 

“Another person reached out asking what Huntington’s disease was, so I gave them a brief overview about it being a hereditary disease and shared some of what we learned in class,” Wilde wrote.

 

Another person told Wilde that “it was such a thoughtful thing that we were doing because they had a friend who had Huntington’s disease before, which I thought was very meaningful to hear.”

Monday, May 13, 2024

Aiming for multiple targets for Huntington’s disease therapies: a hopeful report from the Yang lab at UCLA

 

This article is in commemoration of Huntington’s Disease Awareness Month (May).

 

One of the most impactful university labs focusing on Huntington’s disease, the X. William Yang Research Group at the University of California, Los Angeles (UCLA) employs a multi-pronged approach to investigating potential therapies for this deadly brain disorder.

 

Started in 2002 by X. William Yang, M.D., Ph.D., the lab has produced several key findings on HD, mainly through the study of genetically modified (i.e., transgenic) mice, engineered to carry the HD mutation and exhibit some of the disease-like phenotypes (characteristics).

 

Dr. Yang was inspired to focus on Huntington's disease because of his interaction with patients in Venezuela – the world’s largest clusters of HD families – and the HD scientists working there. In 2000 and 2002 he was invited to observe these families and assist with studies by Nancy Wexler, Ph.D., the president of the HD-centered Hereditary Disease Foundation (HDF) and leader of the landmark effort to identify the HD gene in 1993.

 

Dr. Yang's Venezuela experience cemented his resolve to study HD in his own lab. Indeed, the first research grant ever received by Dr. Yang was from HDF. Today he serves as its scientific advisory board’s vice chair.

 

Dr. Yang’s team has also collaborated with CHDI Foundation, Inc., the largest private funder of HD therapeutic research. Pharmaceutical firms such as Roche (the world’s largest) and Ionis Pharmaceuticals, Inc., the developer of the Roche drug now in its second HD clinical trial, have consulted Dr. Yang for his expertise.

 

Dr. Yang has emerged as a leading academic voice in HD science. Listed as the first author, in February he and two other important prominent HD researchers – Leslie Thompson, PhD., of UC Irvine and Myriam Heiman, Ph.D., of the Massachusetts Institute of Technology (MIT) – published a major co-edited book. Huntington’s Disease: Pathogenic Mechanisms and Implications for Therapeutics presents the latest work on the disease’s medical impact, genetics, the huntingtin protein, new tools and models for research, and an overview of therapeutic approaches and clinical trial programs.

 

 

The back and front covers of Huntington’s Disease: Pathogenic Mechanisms and Implications for Therapeutics (image courtesy of Dr. Yang) (Click on an image to enlarge it.)

 

‘The stars are aligned’ for developing HD treatments

 

Although the use of human data in HD research has increased dramatically, crucial research in mice has become more relevant to potential therapies because of new biotechnologies and the availability of so-called “big data” made possible by powerful computing systems.

 

“This is completely unprecedented in terms of the kind of study we can do,” Dr. Yang told me in a 40-minute interview on January 29, noting the advantages of a “21st century toolbox.” “Mouse models in this context are extremely useful.”

 

We met in Dr. Yang’s office in his lab, which is located in UCLA’s Gonda (Goldschmied) Neuroscience and Genetics Research Center. I was invited to Los Angeles to offer my perspective as an HD gene carrier on the first day of a two-day HDF scientific workshop, co-chaired by Dr. Yang.

 

“I know it's probably an oxymoron to say that it's time to be hopeful, because we’ve been to a hopeful stage many times before,” Dr. Yang said, acknowledging the negative results of some recent clinical trials. He added that “the stars seem to be aligned” for developing HD treatments.

 

 

Dr. Yang (left) with project scientist Chris Park, Ph.D. At the far left is a confocal microscope, which uses laser light to obtain high-resolution images of thick tissues. Behind the men is a light sheet microscope, also used for obtaining high-quality images of tissues (photo by Gene Veritas, aka Kenneth P. Serbin).

 

Focusing on the brain

 

Dr. Yang grew up in Tianjin, China, a port city located 80 miles from the capital, Beijing. In 1985, Dr. Yang was one of five students selected by the Chinese government to participate in the Rickover Science Institute, founded by Admiral Hyman G. Rickover to foster high-school science education for both domestic and international students. Rickover developed the first nuclear-powered engines and first atomic-powered submarine.

 

“I did a whole summer of research at the NIH [National Institutes of Health], working on signaling pathways in rat brains,” Dr. Yang wrote in a follow-up e-mail to our interview. “The research experience got me really interested in studying the mammalian brain.”

 

The Rickover program is now called the Research Science Institute (RSI). Among other prestigious alumni are Harvard University’s Steve McCarroll, Ph.D., a leading molecular geneticist who also works on HD; and MIT/Broad Institute's Feng Zhang, Ph.D., a CRISPR research pioneer.

 

After RSI, Dr. Yang briefly studied at Peking University, one of China's top universities, before transferring to Yale University, where in 1991 he completed the highly demanding joint B.S./M.S. program in molecular biophysics and biochemistry.

 

Over lunch Dr. Yang and I reminisced about our years at Yale. I was privileged to graduate from Yale in 1982. I told Dr. Yang that I had seen Admiral Rickover give a public lecture at the university – a poignant moment for me as a history major because of his military and scientific prominence. I told Dr. Yang of my interest in tracking the contributions of Yale and its graduates like him to HD science and medicine (click here, here, and here to read more.)

 

Dr. Yang completed the joint M.D./Ph.D. program at The Rockefeller University (Ph.D., 1998) and Weill Medical College of Cornell University (M.D., 2000) in New York City. In 2002, he finished postdoctoral research in the Rockefeller lab of Nathanael Heintz, Ph.D., which focuses on HD and other neurological and psychiatric disorders.

 


Gene Veritas (left) (aka Kenneth P. Serbin) with Dr. William Yang in his UCLA office. In the background: a mouse medium spiny neuron. In humans this neuron is one of the cells most affected by Huntington’s disease (photo by Nan Wang, Ph.D., of the Yang Research Group).

 

A ‘trustworthy and versatile’ invention

 

Dr. Yang and his lab have made key contributions to HD science, including understanding the causes and potential pathways to therapies. The team also studies Alzheimer’s disease, Parkinson’s disease, and other neurodegenerative disorders.

 

As a Ph.D. student, Dr. Yang co-invented with Dr. Heintz and Peter Model, Ph.D., the first method to engineer Bacterial Artificial Chromosomes (BACs) to generate transgenic mice. BACs have the advantage of holding long strands of DNA with key regulatory elements that confer accurate gene expression in transgenic animals.

 

In an analysis of this research, which Drs. Yang, Model, and Heintz published in 1997, one leading biologist described their technique as “trustworthy and versatile” for cloning genes and the key task of learning the specific function of particular genes.

 

Indeed, scientists have used this method to generate a variety of transgenic animals, from zebrafish to mammals (click here to read more).

 

The key BACHD mouse

 

In 2008, Dr. Yang and other researchers published the results of a project creating the first BAC transgenic mouse model of HD, the BACHD mouse, their term for this mouse specifically engineered to study HD.

 

As Dr. Yang explained in our interview, the team inserted a long strand of a mutant (irregularly expanded) human huntingtin gene into the mice. Those genetic characteristics do not normally exist in mice. As they hoped, the mice developed dysfunction, displaying impaired movements, shrinkage to the same brain regions affected in HD, and damage to the synapses (the connections between brain cells).

 

“We developed different versions of these mouse models to allow us to ask, for example, which cell types in the brain with mutant huntingtin are important,” Dr. Yang said.

 

The team demonstrated the presence of mutant huntingtin in two key areas of the brain: medium spiny neurons in the striatum and pyramidal neurons (brain cells) in the cortex. (See the photo above with Dr. Yang, me, and an image of a medium spiny neuron. Also see the photo in the next section.)

 

In mice, humans, and other mammals, the cortex handles important processes such as cognition, memory, motor control, and sensory processing. The striatum – an area deep in the brain and greatly affected in HD – controls motor (movement), motor and reward learning, and executive function. In humans, this region is also known as the caudate and putamen. The Yang lab also examines communication between these regions.

 


Dr. Yang (left) and Nan Wang, Ph.D., a project scientist focusing on Huntington’s, in the lab (photo by Gene Veritas)

 

Using mice and genetics to understand HD

 

In detecting the impact of mutant huntingtin in those areas, that initial BACHD research revealed disease phenotypes in both striatum and cortex, Dr. Yang recalled. “That study turned out to be really important because, for the longest time, people thought the striatum, the medium spiny neuron, was really the primary site of action.”

 

Removing the mutant huntingtin from the cortex led to improvement in the mice’s behavior and even partially helped the striatum, Dr. Yang explained. Likewise, deleting mutant huntingtin from the striatum brought some improvement.

 

“But most importantly, if you reduce mutant huntingtin in both cortex and striatum, the BACHD model looks really, really good, almost as good as a normal mouse,” he added.

 

The BACHD work, he recalled, helped to convince the field that  the cortex is one of the key brain regions that should be targeted in HD clinical trials. The Roche/Ionis ASO lowers the level of huntingtin protein more in the cortex than in the caudate/putamen, according to preclinical studies in non-human primates.

 

In sum, Dr. Yang said, the studies of BACHD mice represent a “proof of concept that we can use this kind of a sophisticated – genetically as accurate as we could get – type of mouse model to inform about disease pathogenesis” – how HD develops, progresses, and, significantly, might be treated.

 


A mouse medium spiny neuron (image courtesy of Dr. Yang)

 

From disease switch to vulnerable neurons

 

The Yang Research Group has achieved other key findings, some in collaboration with other labs.

 

The Yang lab teamed with researchers at UC Irvine, UC San Francisco, the University of Pittsburgh, and the University of Tennessee to study the chemical modification of the huntingtin protein itself. This research focused on so-called “chemical tags” that naturally attach to the very beginning of the huntingtin protein, a small region acts like a disease switch.

 

In one experiment, this research used a BACHD-like mouse to mimic the tagging. That resulted in mice that had “very little disease despite having the HD mutation,” Dr. Yang explained. The results were published in 2009.

 

In 2015, the Yang Research Group published a separate study showing the genetic switch is necessary to prevent severe disease including neuronal loss and movement deficits, phenotypes reminiscent of those found in HD. These studies showed that the huntingtin protein itself and its chemical tags could be a source of new targets to develop therapies, Dr. Yang said.

 

From watching mice in ‘log rolling contests’ to unbiased genetic analysis

 

In 2013, the Federal Government announced the launch of the BRAIN initiative to enhance understanding of the human brain. The Yang lab was one of the first 59 in the country to receive support in the initial round of BRAIN funding. It now has its third grant. It receives support from other government agencies, as well as the HDF and CHDI. The lab’s achievements include developing a new, genetic way to label the complete, intricate shape of single brain cells, which allows the study of their function and dysfunction in diseases such as HD.

 

With big data and "the 21st century toolbox," the field of HD research has advanced from more traditional ways of observing diseased mice to more nuanced molecular, cellular and systems biology analyses, Dr. Yang explained.

 

In earlier research, by primarily relying on the behavior and pathology of individual mice, the work resulted in “relatively few readouts” of data, Dr. Yang observed. With that methodology, scientists had mice doing activities such as “spontaneously move” in an open area or on a rotarod, “like the ESPN log rolling contest,” he said. Scientists also routinely measured loss of brain matter.

 

Now, scientists can do a “big-scale, unbiased molecular studies” by examining tens thousands of datapoints, including analysis of DNA, RNA and proteins, Dr. Yang added.

 

Clues from gene expression about neuronal vulnerability

 

Collaborating with CHDI, the Yang lab’s work in this area has involved study of HD’s impact in different areas of the brain, moving beyond the standard understanding that most damage comes in the striatum. The lab has done this research using different types of engineered HD mouse models carrying different lengths of CAG repeats and measured the levels of tens of thousands of RNA transcripts ("RNA-seq," that is, RNA sequencing) in the mouse brains and peripheral tissues.

 

Published in 2016, the results noted that despite the presence of the mutant HD gene throughout the body, the disruption in gene expression in these HD mice is highly selective to the striatum, the most affected brain region in HD. The severity of the disruption is correlated with the length of CAG repeats in these mice. Moreover, the molecular defects in the striatum appear in young adulthood, worsening with age.

 

“There's about 100 or so genes that have essential function selective to the striatal neurons that are most affected in Huntington’s disease,” Dr. Yang said. “And somehow the mutant huntingtin knows to go there and make them the sickest, which we thought was a remarkable find – a sense that there's some fundamental mechanism connecting this CAG expansion to selective neuronal vulnerability.”

 

‘Perturbing’ the mice to understand human modifier genes

 

Taking advantage of the gene signatures from RNA-seq studies, especially those selectively disrupted in the striatum, the Yang lab embarked on a study using such gene signatures to sensitively detect "modifiers" of the disease. To achieve this, they used these genes to genetically “perturb” the mice, Dr. Yang explained.

 

“We basically genetically perturb the huntingtin mouse and say, ‘which gene, if we perturb them just right, can make the disease worse – that's one thing that's interesting – but more importantly make them better. And if better, how much better.’”

 

Continuing this line of work, the lab has continued testing the impact of other genes. These experiments include study of some of the human HD modifier genes – about ten – previously identified by the Genome Wide Association Study (GWAS) from over 9,000 HD-affected individuals and their relatives. The modifiers found by the Genetic Modifiers of Huntington's Disease Consortium can delay or hasten HD onset.

 

In addition, the Yang lab tested over 100 other candidate modifier genes identified in the prior systems biology work.

 

The scientists have tested large number of genetic mutants in HD mice to determine whether this makes the disease better or worse, Dr. Yang said. Noting that the results are still unpublished, Dr. Yang said that the team is drilling down on discovering the best gene targets that could help advance therapies to alleviate the disease.

 

Three potential ways to treat HD

 

Dr. Yang also discussed his outlook for therapies to slow, prevent, or reverse the course of Huntington’s. As noted, he believes that “the stars seem to be aligned” for the development of treatments.

 

In exchanging ideas with other HD scientists, he proposed the model of a stool – which needs four legs to remain stable –  as a metaphor for the benefit of developing multiple therapies (polypharmacy) that could act synergistically for HD.  

 

“If one drug could work for HD, that will be great. However, for many diseases, like HIV or cardiovascular diseases, multiple drugs together can make the disease more manageable, and patients' lives much better.”

 

As of now, Dr. Yang said scientists are developing three potential legs of the therapeutic stool. Each leg represents a new angle in understanding HD and how it might be applied to slow or stop the disease.

 

The first leg: huntingtin lowering

 

As the first leg of the therapeutic stool, Dr. Yang pointed to so-called huntingin lowering – the reduction of the HD gene (DNA), RNA, or its toxic protein in the brain. Pioneered in patients by the above-mentioned Roche/Ionis clinical trial program, this approach has captured the attention of many academic and biopharma labs.

 

This Roche/Ionis drug is an antisense oligonucleotide (ASO), a synthetic strand of DNA that degrades the RNA from making the huntingtin protein. Other clinical trial programs aim to alleviate HD with ASOs, or other DNA or RNA targeting therapies. Some of them using small chemicals to reduce human huntingtin.

 

This approach has received ample coverage in this blog and elsewhere.

 

The second leg: GWAS/mismatch repair genes

 

Dr. Yang pointed to potential therapies based on the HD GWAS genes – which include DNA mismatch repair (MMR) genes – as the second leg of the stool.

 

“Lots of companies now are really excited about some of these genes,” Dr. Yang noted. “They are essential for aspects of repairing DNA. There's not much we know yet about the potential efficacy and safety liability of a drug targeting these genes. We and others are actively doing research in these areas.”

 

Dr. Yang said that some of these genes are known to “stabilize” the CAG repeats, which tend to expand in the brain areas affected by HD. Such "somatic" repeat expansion is thought to be a key mechanism in the disease.

 

A gene with great potential is MSH3, a MMR gene under investigation by academic labs and biopharma firms. Before it had to shut down for lack of funding, Triplet Therapeutics had planned to use an ASO to target MSH3 in a clinical trial.

 

“So far, I can tell you MSH3 looks pretty safe, at least in animal models,” Dr. Yang explained.

 

He cautioned that scientists still need to learn more about the basic biology of the HD GWAS DNA repair genes in the brain and select the best targets and therapeutics before advancing them in clinical trials in patients.

 

The third leg: huntingtin protein-protein interaction

 

The third leg of the therapeutic stool, he said, is how the huntingtin protein interacts with other proteins.

 

So far, researchers have discovered at least 100 proteins that could interact with huntingtin, including in different cell types and at different ages, Dr. Yang said. The interactions occur with both the normal and mutant versions of the protein.

 

At least one of these proteins, HAP40, binds very closely with huntingtin. Dr. Yang described HAP40 and huntingtin as “inseparable buddies.” The Yang lab is actively working on the normal function of HAP40 in the brain and whether it could have a modifier role in HD.

 

As with the GWAS genes, Dr. Yang stressed that research on protein-protein interaction and its potential benefit for patients is ongoing. He added that, in the search for potential drugs, the key is finding “a protein that binds to huntingtin and is required for disease, and ideally this protein is amenable to therapeutic intervention.”

 

Aiming to solve one of the ‘central mysteries of HD’

 

The recent HDF workshop’s focus on “cell-type specific biology” in HD took up the question of why certain brain cell types (i.e., neurons in the striatum and cortex) are vulnerable to degeneration.

 

Dr. Yang stated that it is unclear whether research on cell-type vulnerability could become the fourth leg of the therapeutic stool. “Cell-type vulnerability could be related to” the first three legs, “especially protein-protein interaction and GWAS mismatch repair genes.”

 

However, this does not diminish the importance of cell-type vulnerability.

 

“This question of  selective vulnerability is really a key feature for all neurodegenerative diseases,” Dr. Yang said. “So, for Huntington it's a striatal medium spiny neuron and some of the deep-layer cortical pyramidal neurons.” In Alzheimer’s and Parkinson’s, neuronal cell types in other brain areas are affected.

 

“So the big question is: why, for each disease, certain types of neurons die?” Dr. Yang asked. “If we can understand this fundamental question and elucidate its mechanism, we could use the knowledge to develop new disease-specific therapies to protect neurons from degeneration.   

 

With the workshop, Dr. Yang said, “we think the time is right to revisit what I consider one of the central mysteries for Huntington’s disease – why certain neurons are selectively vulnerable to degeneration despite that mutant huntingtin is expressed in all the cells in the body.”

 

As usual, this group of HD scientists used the workshop to explore new ways to solve this mystery and develop potential therapies.

 


At the HDF workshop: seated, from left to right, Mahmoud Pouladi, M.Sc., Ph.D., Osama Al Dalahmah, M.D., Ph.D., Ashley Robbins, Gene Veritas (aka Kenneth P. Serbin), Sarah Hernandez, Ph.D., William Yang, M.D., Ph.D. Standing, from left to right, Xinhong Chen, Andrew Yoo, Ph.D., Anton Reiner, Ph.D., Baljit Khakh, Ph.D., Nicole Calakos, M.D., Ph.D., Ed Lein, Ph.D., Beverly Davidson, Ph.D., Nathaniel Heintz, Ph.D., Harry Orr, Ph.D., Leslie Thompson, Ph.D., Myriam Heiman, Ph.D., Shawn Davidson, Ph.D., Steven Finkbeiner, M.D., Ph.D., Roy Maimon, Ph.D. (photo by Julie Porter, HDF)

 

Bonding with the scientists

 

Following our interview and tour of the lab, I made a PowerPoint presentation to Dr. Yang and other members of the lab: “Advocating for the care and cure of Huntington’s disease: a biosocial journey.”

 

I spoke about my family’s struggles with HD, my advocacy, and my deepening interest in the social and scientific history of the HD movement. Afterwards, I answered questions.

 

Once again, I bonded with a fellow Yale graduate immersed in the fight against Huntington’s disease and scientists dedicated to a cure.

 

 

The X. William Yang Research Group after hearing Gene Veritas speak on his Huntington’s disease story. Seated (from left to right) Chris Park, Ph.D., Xiaofeng Gu, M.D., Ph.D., Dr. Yang, Gene Veritas, Nan Wang, Ph.D. Standing (from left to right) Ming Yan, MPH, Masood Akram, Ph.D., Tien Phat Huynh, M.D., Ph.D., Daniel Lee, Ph.D., Nianxin Zhong, Henry Chen, Lalini Ramanathan, Ph.D., Alexandra Shambayate, Leonardo Dionisio, Amberlene De La Rocha, Linna Deng Ferguson

 

Thanks to Emily Farrell, Executive Assistant, Department of History, University of San Diego, for assistance with the interview transcript.

 

Disclosures: the Hereditary Disease Foundation covered my travel expenses to Los Angeles. In support of the HD cause, I hold a symbolic number of Ionis shares.

Friday, May 24, 2019

My Huntington’s disease sister – and a hero who strives for the unthinkable


Sharon Shaffer is my Huntington’s disease sister – and my hero.

Afflicted with progressively worse HD symptoms the past 15 years, San Diego area resident Sharon decided to once again attempt the unthinkable for someone heading into the final years of the fatal, incurable disorder: she rowed the equivalent of an aquatic marathon (26.2 miles) on a gym machine in six and a half hours.

The May 10 event, with loved ones and supporters cheering her on, was called “Sharon's Marathon Row for Huntington's Disease Awareness Month.” 

Sharon’s feat was captured in a five-minute video titled Magic on Marathon Row, produced by filmmaker Nathan Apffel, who also directed the feature-length documentary The Longest Journey, about the Shaffer nuclear family’s epic battle against Huntington’s.


A scene from Magic on Marathon Row

“When disease takes your health and mobility and will take your life, you have a choice,” the video’s overlying text says. “Meet Sharon, a real-life super woman. As Sharon’s body gives out, her determination grows. As her world contracts, her commitment to raising awareness intensifies. As her body breaks down, one thing remains consistent: her determination to fight.”

Sharon’s husband Renato told me in an e-mail that, despite her advanced HD symptoms, she did the "marathon" through “sheer perseverance.”

“It is the only exercise she is able to do without assistance,” he added.

“Sharon, you truly are an inspiration to so many,” wrote E.J. Garner, the chair of the board of the Huntington’s Disease Society of America, in response to my Facebook posting of the video. “Thank you for being such a beautiful example of persistence to fight and bringing awareness to Huntington's disease.”

“She completed a feat only few in the entire world, even healthy and athletic, would not dare approach, let alone finish,” observed LeeJ Razalan, a friend and the owner of Stay Classy CrossFit, the San Diego gym where the event took place. “Sharon's statement in life and in disease will forever ring: we shall overcome and we will finish this together."

Watch Sharon in the video below.


Advancing symptoms

The “marathon” exhausted Sharon. “She could barely move when we got home and took a good three days for full recovery,” Renato explained.

With her family’s help, Sharon has remained one of the most physically active HD-afflicted individuals I have encountered. The highly demanding CrossFit workouts have been one of her favorite activities.

Renato believes that CrossFit delayed Sharon’s need for a wheelchair.

“I also believe the people she worked out with gave her motivation,” he added. “She always looked forward to working out.”

However, Renato also described CrossFit as a “barometer” of HD progression.

In recent years she has become physically weaker, and the involuntary movements caused by HD have increased.

“We have witnessed a rapid decline in the past twelve months,” Renato wrote. “She is no longer able to walk unassisted, and her speech is becoming more labored every day. We have full-time in-home care and are so fortunate they are doing a really great job taking care of her.”

Sharon still exercises, but “it gets more difficult every week,” Renato added.

Renato allowed Sharon to row in the “marathon,” he wrote, because as symptoms worsen, exercise will become impossible. That moment will be "heartbreaking."

An upbeat family

I met Sharon about two decades ago at the HDSA-San Diego support group. With others in the breakout group for presymptomatic gene carriers like us and also the untested at-risk, we shared our fears about the disease and its consequences for our children and extended families.

The Shaffers became one of the most active supporters of the cause. Between 2005 and 2015, with Sharon, family members, and others following in support vehicles, Renato and three other riders competed four times in the Race Across America, a non-stop coast-to-coast bicycle race. They always completed the race in fewer than the required eight days.

The Longest Journey documentary chronicles the 2015 race. “In contrast with most presentations of HD I’ve witnessed in the two decades since my mother’s diagnosis for the disorder, this often emotionally wrenching film left me, an HD gene carrier, feeling upbeat,” I wrote in a review of a private screening of the film in 2016 (click here to read more)

The closing words of Sharon’s rowing video ask viewers to learn more about Sharon’s story by watching The Longest Journey. (It’s on Amazon and free to Prime members.)

According to Renato, Amazon statistics reveal that the film has been viewed 200,000 times.

The essential goal: treatments

Sadly, I’ve witnessed how HD has overcome Sharon, transforming her from a healthy and vibrant woman into someone now dependent on a wheelchair and the assistance of others.

However, Sharon has demonstrated that, despite the ravages of the "devil of all diseases," the core of her personality has survived.

As we enter the final week of HD Awareness Month, Sharon’s gutsy fight reminds us all that we must not give up in the face of Huntington’s difficult challenges.

For me, Sharon’s devotion to exercise is a cue to spend more time swimming.

At the same time, exercise, although certainly important, has not stopped Sharon’s HD from progressing.

We need effective treatments – urgently.

In the HD movement, advocates create moments that capture the essence of the cause.

In defying seemingly insurmountable obstacles, the Shaffers remind us of the immense scientific, financial, political, and social challenges that the HD community faces in seeking to find the first effective treatment – and perhaps even a cure – for a neurological disorder.