Showing posts with label police. Show all posts
Showing posts with label police. Show all posts

Tuesday, November 03, 2020

Annual Huntington Study Group meeting reveals an HD community energized to aid families, develop treatments


Moved online because of the COVID-19 pandemic, the 27th Annual Huntington Study Group Meeting nevertheless revealed an HD community committed to aiding affected families and developing cutting-edge treatments.

Originally scheduled for Atlanta, GA, the virtual conference took place from October 29-31, with more than 800 scientific and medical participants from around the world. The meeting featured two days of presentations concerning care of HD-afflicted individuals, as well as updates on key clinical trial programs, aimed at producing drugs.

 

On Family Day, which drew an estimated 180 additional people, the affected, caregivers, and advocates heard both expert presentations on coping with HD and highlights regarding research.

 

Research moving full steam ahead

 

Martha Nance, M.D., a long-time member of the Huntington Study Group (HSG) and the director of Family Day organizing committee, kicked off that event with a reflection on the “highlights and lowlights” of 2020 so far. A neurologist and frequent sounding board for this blog, Dr. Nance is also the medical director of the Huntington’s Disease Society of America (HDSA) Center of Excellence at Hennepin County Medical Center in Minneapolis, MN.

 

We all know the lowlights, Dr. Nance said: the COVID-19 pandemic, the death of George Floyd in Minneapolis, the 2020 election with its uncertainty, and climate change.

 

“For me, a highlight of this entire year was this meeting,” Dr. Nance said, referring to the great progress in HD research. “The last two days we heard about more things than you can shake a stick at.”

 

Dr. Nance listed the important developments detailed in the scientific talks, including several innovative ways to potentially block the harmful effects of the mutant huntingtin gene. Both the scientists and family members got updates on GENERATION HD1, the historic, in-progress gene silencing clinical trial by Roche aimed at reducing the amount of toxic huntingtin protein in the brain.

 

At the conference, several speakers referred to temporary slowdowns in research programs because of the new safety protocols resulting from COVID-19. Dr. Nance also noted difficulties in accessing some HD community members because of the pandemic in the U.S. and abroad, although she also has observed a helpful “explosion” in telemedicine.

 

However, despite the uncertainty about overall scientific research funding because of the COVID-19 crisis, “research is alive and well in Huntington’s disease,” Dr. Nance stated. “If what happened at this meeting continues, research in Huntington’s disease is moving full steam ahead.”

 

“I found the meeting to be energizing,” Dr. Nance concluded in an e-mail to me on October 31.

 

For detailed reports of the research presentations, see HDBuzz’s coverage by clicking here and here.

 

For the next year, HSG is providing access to on-demand recordings of the conference talks and other events. Click here to register for access.

 

‘Heroes,’ and a thank-you for me

 

Dr. Nance devoted most of her Family Day introduction to counterpoising the difficulties of 2020 with the stories of “heroes” who have stepped up to assist others in the HD community by exercising their unique skills.

 

“We need to hear about some people who’ve done good things,” she explained. “I hope that you can emboldened, empowered by some of these heroes.”

 

Dr. Nance – to my surprise and appreciation – began with the example of me, Gene Veritas (aka Kenneth P. Serbin), the author of this blog, now in its sixteenth year. Dr. Nance recalled how she and I had worked together on our college newspaper (click here to read more). She said that I use my journalistic skills to help inform the HD community, and to be “very up front about my struggles and fears” as a carrier of the HD mutation.

 

I write in this article about myself because Dr. Nance stressed how important it is for the HD community to be informed about its social ramifications.

 

‘I can’t breathe’

 

Dr. Nance recalled my September 2014 report on Jeffrey Bane, a West Virginia man arrested because the police misunderstood his HD symptoms to be the result of narcotics abuse (click here to read more).

 

Dr. Nance replayed the video of a bystander who had filmed Jeff suffering injuries as the police held him to the ground, thinking that, with his involuntary, HD-caused movements, he was resisting arrest. “I can’t breathe,” Jeff said desperately as he asked the officers for help.

 

Jeff only received the help of paramedics after the police had held him to the ground for almost ten minutes, Dr. Nance pointed out. 

 

Then she asked the attendees “to just take a deep breath, pause, and think for a minute.”

 

After 54 seconds elapsed, she resumed her presentation. “Hopefully you took a deep breath,” she said. “I think probably you felt anger, hate, sorrow, sadness, fear, anxiety.”

 

She continued: “We can’t change something that happened six years ago. What we can do is try as hard as we can to keep events like this from happening against in the HD community.”

 

Dr. Nance noted that HDSA has a toolkit for educating first responders, police officers, and fire personnel about HD. The organization provides other resources (such as a special HD ID card) to help HD-affected individuals and their families prepare for potential encounters with the police, she added.

 

(I have explored these crucial themes in other articles. Click here to read more.)

 

‘Your life matters’

 

In examples surely moving to the audience, Dr. Nance presented the stories of several other HD “heroes.” 

 

Inducted into the Minnesota Auctioneers’ Hall of Fame in 2005, Joe, whose wife and daughter died of HD, took “his grief, his sadness, his sorrow” and raised money and bought electric toothbrushes for hundreds of HD-afflicted people, Dr. Nance recalled.

 

As a ten-year-old watching his mother face HD, B. J. Viau started an annual basketball hoop-a-thon that over the years raised some $750,000 for HD research. Among other things, B. J. went on to become one of the founders of the highly active international Huntington’s Disease Youth Organization

 

Diagnosed at ten with juvenile HD, Elli started kickball tournaments to support the cause. She became an internationally recognized HD advocate.

 

Dr. Nance also recognized the 791 “heroes” who are taking part in the GENERATION HD1 clinical trial.

 

With HD, she said, it’s easy to become angry, sad, and depressed. However, people can also “stand up tall” to help others. We need more everyday heroes, she added.

 

“Your life matters – not to take away from anybody else whose life matters,” Dr. Nance said in closing. “What you do makes a difference.”

 

Dr. Martha Nance (left) praises the advocacy of juvenile Huntington's disease-affected Elli Hofmeister (in images at right) at the virtual 2020 HSG Family Day (screenshot by Gene Veritas).

Wednesday, December 09, 2015

How to make law enforcement a friend – not a foe – of people with Huntington’s disease (and other disabilities)

Encounters with misinformed, sometimes insensitive police are one of the most vexing and tragic problems faced by people disabled by Huntington’s disease. So HD advocates and organizations are proactively trying to help law enforcement officers understand symptoms of the disorder and properly handle individuals in distress.

“We want them to be a friend, not a foe,” Doug Schulte, a long-time caregiver to his HD-afflicted wife Dorlue, said of the relationship between HD-affected people and police officers.

Doug, a retired fire captain with the San Diego Fire-Rescue Department, has joined HD advocates in the area and around the country in raising awareness about the disease. Its many behavioral disorders have often been misinterpreted as drunkenness, drug usage, or intentional hostility. People with HD often have an unsteady gait, involuntary movements, slurred speech, aggressiveness, and other difficulties that hamper social interaction. But those are warning signs for police untrained for such interactions.

An informal survey, which I conducted among HD families on Facebook recently, revealed that police misunderstanding and harsh treatment of affected individuals continue, but also that some officers respond with respect. (Click here and here to read about two previous controversial cases, in West Virginia and Pennsylvania.)

The survey also showed that some HD families are taking the initiative to contact the local police to educate them about the disease and their loved ones.

At the same time, thanks to both disease advocates and changing perceptions of police officers’ responsibilities, some law enforcement agencies have established programs to increase officers’ sensitivity when encountering or responding to calls involving the cognitively disabled and the mentally ill.

On October 3, California Governor Jerry Brown signed into law a bill mandating that police officers receive more in-depth training for helping citizens with mental illness or developmental disabilities, or who are under the influence of certain substances.

‘Take Me Home’

Doug recently registered Dorlue in the “Take Me Home” Program of the San Diego County Sheriff’s Department. Under the program, people with Huntington’s, Alzheimer’s disease, autism, and other cognitive disabilities or their loved ones can register their information online. Registrants can upload a photo of the disabled individual and provide a description of the person and symptoms that officers should know about.


Dorlue Schulte (family photo)

Lt. Mike Knobbe, a 24-year veteran of the sheriff’s department and the coordinator of Take Me Home, said that the program aims for good relations between the police and the disabled.

“The whole goal of this program is to build that partnership and to build that understanding, to allow you to tell us what you want us to know about your individual with special needs,” said Lt. Knobbe in a December 2 interview at sheriff’s headquarters.

Lt. Knobbe runs Take Me Home as part of his work as head of the department’s search and rescue unit. He also represents the department at the ambitious Alzheimer’s Project established by the San Diego County Board of Supervisors to seek treatments and improved care for that disease. The region has some 60,000 people affected by Alzheimer’s, some of whom dangerously wander from home and need a program like Take Me Home, Lt. Knobbe said.

Advocates for the disabled and affected families might not trust the police, he said, if officers don’t understand the dynamics of a disorder and the difficult situations that can result.


A display table with items from and about the "Take Me Home" Program (photo by Gene Veritas)

“So this is our opportunity to say, ‘Hey, we want to understand,’” he said. “What do you want to tell us, so when we get a call referencing your loved one, or to your residence, it will automatically come to our deputy, and we can have that knowledge ahead of time.”

With more than 500 individuals registered in the sheriff’s department’s countywide database, Take Me Home allows the department and other local police agencies to send to patrolling officers’ computers a photo of the disabled individual, medical information, and an explanation of unusual symptoms or behaviors. So far, the department has not tracked results, but may do so in the future. It is actively promoting the program to other law enforcement agencies in San Diego County and with disability organizations.

As Lt. Knobbe explained, typically misunderstood HD symptoms such as aggressiveness can “absolutely” go into the database.

“That’s something we want to know,” he said. “We still have a duty and a responsibility as a law enforcement officer to respond, yet it gives us a chance to have some information as to why might this be occurring.”

To register, go to www.sdsheriff.net/tmh/. You can listen to Lt. Knobbe introduce the program to the HD community in the video below.

An online database

The San Diego Sheriff’s Department adopted Take Me Home in 2010 at the initiative of Brian Herritt, a former Palomar College officer with an autistic son who once wandered from the family car and encountered a policeman. The boy was unhurt, but the incident prompted Herritt to think about why officers should understand the behaviors resulting from autism, Lt. Knobbe said.

In advocating for the program in San Diego, Herritt studied the Take Me Home program of the Pensacola (Florida) Police Department. Other departments around the country have similar programs.

In San Diego, Take Me Home first relied on patient advocacy groups such as the local Alzheimer’s association to provide a list of individuals for the database.

This process proved cumbersome, lengthy, and inconvenient, and the program was falling into disuse, Lt. Knobbe said. In early 2014, Sheriff Bill Gore tasked him with revamping the program.

“You can now register online on your own,” Lt. Knobbe said of the most important change in the program. “If you’re a caregiver, and you want to register your loved one, you can access our website and the Take Me Home registry and you can actually do you own online registration via your Android device, your iPhone, your iPad, your home computer, attach your own photograph, give us the information you want us to know, and do it from the comfort of your home.”

People register voluntarily, but the information remains confidential, he explained.


A screenshot of the Take Me Home webpage, December 9, 2015

Encouraging participation

Lt. Knobbe credited Doug Schulte with introducing him to HD and getting the disorder listed in the registry.

Before the introduction of the online option, Take Me Home “wasn’t utilized,” said Jamie Jirik, the board secretary for the San Diego Chapter of the Huntington’s Disease Society of America (HDSA). “The information wasn’t being updated effectively.”

“We want this to stay around,” Doug said, adding that he and Jamie are encouraging all San Diego County HD families to participate. “We want this to be something that law enforcement is used to using for people not only with Huntington’s, but Alzheimer’s, autism, and other mental illnesses. People who are deaf, too. It’s equipped with photo recognition software.”

Take Me Home gives law enforcement a good option: contacting a family member instead of arresting an HD person, Doug continued. “It’s what law enforcement wants to do,” Doug said. “They don’t want to take someone down and detain them. It’s a big waste of time for them.”

“If we have a lot of individuals in the database, we’ll have more resources available to us from law enforcement and other first responders,” Jamie added.

“There’s no risk to it,” said Doug. “It’s all reward. There’s no way that putting the information in there is going to be a detriment.”


Jamie Jirik and Doug Schulte (photo by Gene Veritas)

A problem ‘easy to fix’

Using HDSA’s Law Enforcement Toolkit, Jamie and Doug have teamed up to raise awareness about HD among police agencies, paramedics, and other first responders in the San Diego region. They have made presentations at training sessions and other departmental-sponsored events.

Doug calls on his personal experiences as a caregiver to get across the message about HD.

“When you explain how it unfolds in a person’s life, it brings a new dimension of understanding,” he said.

Dorlue has not experienced difficulties with the police, but Doug recognizes that the potential exists, as it does for many HD-afflicted people. He’s also listened to the sufferings of other families.

“The problem of police detention of HD-affected individuals is an awareness issue that is easy to fix,” he said. “We want the resources that society puts in place to protect the HD community to work with us, not against us. My background in fire was to help solve people’s emergencies. Police want to be there helping us, not detaining us if it isn’t warranted. I understand, because I have worked beside law enforcement. They have an extremely difficult job – they just are not aware of HD.”

Teaching response teams about HD

Jamie, 28, watched the disease kill her father in her home state of Illinois when she was 12. “He suffered from a lot of the behavioral aspects of HD,” recalled Jamie, who has tested negative for HD. “We saw his personality change greatly as the disease progressed.”

Jamie’s father was “confrontational at times” with the police and arrested several times, but her mother “actually had a great relationship with law enforcement,” Jamie said. “They did a really good job because they didn’t beat him up and respected him as much as possible.”

In addition to promoting Take Me Home to the local HD community, Jamie and Doug have explained the disease to local police agencies’ Psychiatric Emergency Response Teams (PERT). Such teams act as a liaison between law enforcement and health resources.

“They have the training and experience to interact with individuals with psychological difficulties,” she said. Departments activate PERT when people become a threat to themselves or to others, cannot communicate, or cannot clothe or bathe themselves, Jamie explained. PERT gets a trained clinician inserted into a police situation.


Raising awareness about HD: Jamie Jirik (left), Dr. Mark Marvin, director of the San Diego County PERT, Lt. Debra Farrar of the San Diego Police Department, and Doug Schulte (personal photo)

Feeling safer

Jamie and Doug are promoting other ways of insuring the proper treatment of HD people, including the newly standardized Huntington’s Disease ID Bracelet sold by HDSA.

“It’s a tool for law enforcement,” Doug explained. “They can pop this open and get the specific information about the person’s medical situation. When a paramedic has an interaction, they need to see the medical history and medications. There’s a piece of paper in here where you can write all that.”

Other resources can be viewed at HDSA’s Law Enforcement Education webpage.

The HD advocacy organizations HDCare.org and WeHaveAFace.org have announced a cooperative effort to provide a new medical ID alert bracelet for HD people. (Click here to read more.)

“There’s not one way that’s going to work for everyone, but having all these [resources] available for HD families to utilize will allow people to feel safer and just communicate with first responders,” Jamie observed.



Jamie Jirik displays the Huntington's Disease ID Bracelet (photo by Gene Veritas).

Tuesday, September 16, 2014

Outrage over video of police’s rough handling of man with Huntington’s disease spurs calls for justice, awareness

Amateur video has proven crucial to holding police officers accountable around the country.

Now such video of a police encounter with a man suffering from Huntington’s disease – held down for nearly ten minutes as he struggled to breathe and pleaded for help – shockingly reveals  how rare disease communities must fight against profound ignorance, discrimination, and hostile treatment.

In the small town of Westover, WV, police on September 6 arrested Jeffrey Bane, a 39-year-old father of two from nearby Morgantown, WV, and charged him with disorderly conduct, obstructing an officer, and battery on an officer. At least one officer and a cruiser from the neighboring Granville, WV, police department were also at the scene.

From their actions and attitude, the officers seemed to have no inkling that Bane was ill.

It’s a reminder that police should all be exposed to the Law Enforcement Training Guide produced by the Huntington’s Disease Society of America (HDSA), and that those afflicted by the disease would be wise to carry the “I Have Huntington’s Disease” cards recommended by HDSA.

Behind the incident

Bane has HD, which has left him unemployed. He comes from a family with a long history of Huntington’s and has suffered from the disorder for about five years, though he can still accomplish many daily activities. His symptoms include chorea, the involuntary, often jerky movements typical of the disorder.

Bane had been walking down the street with his toddler daughter in a stroller and carrying his infant son when, in response to two 911 calls alleging concern for the children, police accosted him.

According to a local newspaper that had access to the official police report, the police said that Bane “appeared to be under the influence of narcotics, handled the children roughly and became agitated as officers spoke with him about the children.” The police said the children seemed to be “overheated.”


Jeffrey Bane's police mug shot

When asked what “provisions” he carried for the children, “Bane struck the stroller violently with his hand, pushing it forward abruptly while his infant son was still seated inside,” the official complaint stated. When the officers attempted to restrain Bane, he began to fight. He allegedly kicked one officer and tried to spit on others.

Sara Bostonia, a Grafton, WV, resident and healthcare worker who was driving to her mother’s home in Westover, saw Bane on the ground and started filming the scene with her smartphone. She had not previously known Bane.

“The first thing I saw was blood,” Bostonia said in a phone interview on September 13. “That’s why I stopped. I saw a man with a bunch of other men on top of him. There were no [police] lights on. I just thought there was something wrong about the whole way he was moving.”

Bostonia said that she rolled down her window to get a clearer view.

“I couldn’t believe what I was seeing,” she said. She then started filming.

I’ve never done that, never,” she continued. “Once he started the gurgling and screaming for help, I could tell he was completely pinned to the ground. I said ‘stop it’ while I was getting out of my car.”

In the video, as the officers hold Bane to the ground, he displays frequent episodes of chorea.

“Stop it!” the officer holding Bane’s head to the ground shouts. Another says: “Stop fighting us.

I cant breathe, goddamit,” Bane says desperately. “Help me. I can’t breathe…. Help me, sir, please help me.”

As Bane appears to choke, one of the officers orders him to “stop spitting.

“Help me, please,” Bane pleads again. “I’m not trying to fight you guys.”

The officers misinterpret involuntary movements in Bane’s legs as attempts to kick them. They clearly had not been trained to assess the possibility that such actions resulted from HD (or any other condition).

“The scene portrayed on the video is tremendously upsetting and sad to anyone who recognizes the chorea and erratic gait that Huntington's disease causes, that could have been largely or solely responsible for the behavior that led the police to the scene,” Martha Nance, M.D., the director of the HDSA Center of Excellence at Hennepin County Medical Center in Minneapolis, MN, and the author of the preface to the Law Enforcement Training Guide, wrote in an e-mail. “In the courts, we assume that people are innocent until proven guilty, but on the street, there may be an assumption of the worst until the situation defuses.”

During the incident, the children lost contact with their father. They do not appear in the video. Contacted by the police, Bane’s girlfriend Delsie Stup, the children’s mother, came to the scene to pick them up.

Without knowing Bane nor his HD status, Bostonia put the video on her YouTube channel on September 7. To date it has had nearly 120,000 views.

Bostonia said she posted the video because she wants all the facts “out there. Public scrutiny of the facts is paramount. It is our job. We shouldn’t have to police the police, is how I feel about that. As citizens, we do a pretty good job of policing ourselves.”

You can watch an enhanced version of the video on another YouTube channel below.


After receiving medical treatment and posting bail, Bane was released about 48 hours after his arrest.

“Unfortunately, situations like what happened to Mr. Bane happen far too often in America and around the globe,” HDSA CEO Louise Vetter said in a phone interview on September 12. “They are heartbreaking and tragic and they’re why we work so hard to educate the community at large about Huntington’s disease. That’s why it takes all of us sharing our outrage but also committing to educating about Huntington’s disease so that circumstances like this aren’t repeated.”

According to Dr. Nance, no statistics exist on arrests or incidents with the police involving HD-affected individuals. However, difficulties with the police and/or misunderstanding of symptoms – usually mistaken for drunkenness or drug usage – have occurred in many HD families. In 2007 I myself visited a San Diego HD man in jail improperly charged with public drunkenness. HD-affected individuals can appear drunk because of their chorea and also slurred speech.

Outrage in the community

The Bane incident has received newspaper, television, and blog coverage in the U.S. The London Daily Mail also ran an article.

The video has also stirred controversy in the greater Morgantown area of West Virginia, home to small towns dependent on the coal-mining and natural gas industries as well as intellectual life at West Virginia University (WVU), with nearly 30,000 students.

“The arrest video on YouTube of Granville man Jeffrey Bane has caused outrage and accusations of police brutality from those who feel Westover and Granville Police were unfair to a man suffering from Huntington's disease,” observed a report on WDTV, a Bridgeport, WV, TV station.

According to that report, the city of Westover views the incident as a “non-issue.”

"The outrage of anything even close to police brutality in the case of Jeff Bane is totally unwarranted,” Westover Mayor Dave Johnson said in a statement released to the station. “If I had any doubt whatsoever I would be the first to bring the officers involved to the carpet, so to speak.… The City of Westover has moved on."

According to Bostonia, the community was indeed “in an uproar” over the incident. In the wake of intense national discussion following this summer’s police shooting of Michael Brown and riots in Ferguson, MO, “people are trying to get a protest together,” she said. “A couple weeks ago they held a protest for Ferguson with about 20 people down at the courthouse. This one hits closer to home. I wouldn’t be surprised if it happens here, too.”

Sara Bostonia (personal photo)

At the same time, people are worried about the community’s security, she said.

“Everyone in town is invested in this incident in some way,” she explained. “Maybe their brother’s a cop and they’re afraid. Everyone is connected in some way to one another.

“I didn’t want to take that video. I wanted them to detain him properly.”

‘Justice for Jeffrey’

Bane and Stup have issued no public statements, but Bane’s nephew Josh Bane, 22, emerged as the family spokesperson, setting up a public Justice for Jeffrey Bane page on Facebook.

As the son of a father (Jeffrey’s brother) who has already developed HD symptoms, Josh has a 50-50 chance of inheriting HD.


Josh Bane (personal photo)

Josh alleges that the police violated his uncle’s rights. In the search for truth about the incident, he has sought to obtain and release all related information. The extended Bane family is also considering the possibility of legal action and may seek donations to help cover the cost.

“At the end of the day, someone was detained unlawfully for ten minutes and he was held down and choked on his own blood as he begged for help from anybody,” Josh Bane said in a phone interview on September 13. “It doesn’t take that long to detain a 160-pound man with three officers. They mistook his involuntary movements for resisting, when in reality he suffers from Huntington’s – all of this in front of his two children, who were unattended.

“They could have easily cuffed him and put him in the car in 30 seconds and continued on as if it were routine. For some reason, they wanted to punish him for ten minutes. It was a brutal timeout, if you want to be sarcastic about it.”

According to Josh, the police sprayed mace on his uncle and punched him in the face. In the video, blood covers Jeffrey’s face. The Justice for Jeffrey Bane page includes photographs showing the injuries allegedly suffered by Jeffrey in the incident.


View of some of Jeffrey Bane's injuries allegedly suffered in police incident (photo from Justice for Jeffrey Bane Facebook page)

Going to the park

Josh emphasized that, despite suspicions of child abuse and drug usage, the police did not charge Jeffrey with those crimes. He described as false one media report asserting that Stup told police Jeffrey had an “opiate dependency” and that the couple had fought and she was planning to leave Jeffrey. He added that when the officers questioned him about drugs, Jeffrey became “agitated,” offering immediately to take a urine test.

“She wasn’t even home when Jeff left with the kids,” he said, adding that the couple has strived to “hold it together and deal with everything they have to go through.”

“Uncle Jeff was just going to the park with his kids,” Josh said, explaining why Jeffrey was walking down the street with his children.

Josh, who lived in the same home with Jeffrey for several years and has watched him decline because of HD, recognized that his uncle’s symptoms have diminished his life.

He’s not wheelchair-bound by any means, but the jerking is bad,” Josh said. He’s not to the point where he’s bedridden. He can’t work. He can’t have a normal life by any means.”

However, Josh also asserted that having HD does not prevent Jeffrey from enjoying his family and exercising his rights as a parent.

Josh asserted that the police misunderstood the HD-caused jerky movement of the stroller as lack of concern for the children.

“Who would deny any person the right to their children regardless of how sick they are?” he said. The children represent the one thing that brings Jeffrey and Stup “joy in the world.”

As part of its report, WDTV showed footage of a surveillance video of Jeffrey walking down the street with his children moments before his arrest.

Josh posted the video on the Justice for Jeffrey Bane with a comment: “My uncle walking just prior to his arrest. Does this look like child abuse? He's simply walking to the store with his kids. You tell me if this warranted him being detained in the manner that he was.”

You can watch the video below.


Seeking to educate the police, society

Serious questions linger about this incident.

In particular, why did the officers simply not put Bane into a police vehicle immediately after handcuffing him? Why did they not respond to his pleas for help? Did the officers have crisis intervention training?

Westover Police Chief Ken Fike did not respond to my request for an interview to discuss the incident. Nor could I reach the Granville chief. I had hoped to raise awareness about HD. I will send both departments a copy of this article and tell them how to obtain HDSA’s above-mentioned Law Enforcement Training Guide.

Other HD advocates focused on the incident are also working on awareness efforts.

We’ve got to spread awareness,” said Josh. “This is a disease that’s so unknown. People think it’s Parkinson’s. This is different. It completely disrupts the mind. If all that comes out of this is awareness for that, I’ll be happy.”

Be brave about your HD

Josh confirmed that Jeff did not tell the police he had HD. Nor was Jeff carrying the HDSA “I Have Huntington’s Disease” card.

“People with HD need to be brave enough to say ‘I have Huntington's disease,’” wrote Dr. Nance, who was recently invited to write a book chapter on HD in the criminal justice system. “It is up to the people around them, including law enforcement officers, to understand what that means.”

Dr. Nance also pointed out that HD-affected individuals can be extremely “impulsive,” sometimes causing the line between intent and symptom-driven behavior to become blurry.

“And some people with HD do get into drugs and alcohol, so just saying ‘don't hurt me, I've got HD’ may underestimate the danger of HD to self or others,” she observed.

Like Josh and Vetter, Dr. Nance concluded that people should channel their outrage about the Jeffrey Bane incident into proactive, public advocacy.

“Let us all use this opportunity, as citizens, or members of HD chapters, to speak to our local law enforcement – police, fire, emergency – about HD, and to provide them with the HDSA Law Enforcement Training Guide.