Join the Facebook Live event (soon!) on Pope Francis’s historic audience with Huntington’s disease families

I want to invite the Huntington’s disease community – and all potential new supporters of the cause – to participate in my Facebook Live interview about Pope Francis’s historic HD audience on Wednesday, May 31, at 11 a.m. Pacific Daylight Time.

Conducted by San Diego Union-Tribune reporter Bradley Fikes, the interview will take place at this link: j.mp/sdutface. Participants can send questions and comments.

The interview will discuss details of the papal audience, where Francis declared that HD should be “hidden no more.” It will also allow for reflection on the significance of the event for the HD movement. (Click here to watch highlights of the audience).

Building on #HDdennomore’s goal of increasing global awareness of HD and removing the shame associated with the disease, we in the HD community can use the interview to expand our base of supporters.

Please invite others beyond your regular circle of friends, relatives, and acquaintances to watch.

Gene Veritas (aka Kenneth P. Serbin) with Pope Francis, who is holding a picture of Gene's late mother Carol Serbin, a victim of HD, and her long-time caregiver, the late Paul Serbin (photo by L'Osservatore Romano)

‘Crying a few million tears’ for the fallen victims of Huntington’s disease

Huntington’s disease relentlessly attacks the brains of its victims and in other ways wearies many of us involved: advocates, caregivers, gene carriers like myself awaiting onset, young people pondering genetic testing.

Knowing at 56 how fortunate I am to have remained healthy beyond my deceased mother’s age of onset, I took a “break” from advocacy over the summer. (Click here to read more).

However, on October 24 the hard reality of HD hit home once again.

Responding to a request from the Huntington’s Disease Society of America (HDSA) for information on this blog’s impact in the “landscape of HD communication,” that morning I wrote a long e-mail detailing how At Risk for Huntington’s Disease has reached thousands of people via both the web and Facebook.

Since I began writing in January 2005, the blog’s 230 articles have garnered more than 650,000 page views. More than 3,200 Facebook friends also have access to the blog in 60 HD-related groups.

“I think one of the most important aspects of the blog has been the wide range of topics it has covered: my family's struggles with the disease (mother dying, me testing positive, [my daughter] testing negative, etc.), the many social implications of the disease, advocacy issues, and the search for treatments,” I observed.

Reviewing the blog’s history reminded me of many painful moments in my struggle and of the HD community's collective suffering.

A nervous stumble

That afternoon, I had my annual HD checkup with a neurologist.

As with past checkups, in the hours before the visit, I became apprehensive about my performance on the various neurological tests.

One involves walking heel-to-toe along a straight line. This year I began that test with a bit of a nervous stumble. I wondered if that might be an early sign of onset.

I regained my balance and successfully completed the walk. I was going to suggest to the doctor that I repeat it, but she told me that I had done fine.

The other tests also went well.

Fortunately, she once again declared me symptom-free.

Tensing up at support group

Naturally, I felt greatly relieved.

However, I faced yet another challenging HD moment that evening: the annual research update at our local support group, from Jody Corey-Bloom, M.D., Ph.D., the director of the HDSA Center of Excellence for Family Services and Research at the University of California, San Diego.

Each year I record Dr. Corey-Bloom’s talk, later posted here and on Facebook. Striving to produce a video of good quality, I tensed up as I focused in and out and turned the camera to follow Dr. Corey-Bloom’s movements. This was vital information for the HD community.

With the rest of the audience, I intently listened to her presentation of the latest research breakthroughs and news of the crucial clinical trials that provide hope for effective treatments and perhaps even a cure. The update included a detailed discussion of the historic gene-silencing Phase I trial by Ionis Pharmaceuticals, Inc. (Click here to read more about the Ionis trial.)

Given the many projects in progress, Dr. Corey-Bloom spoke for 90 minutes, her longest update ever.

Seeing HD-affected support group attendees reminded me of my good fortune but also of the inevitability of my own onset, if a treatment isn’t found.

You can watch Dr. Corey-Bloom’s update in the video below.

Update on Huntington’s Disease Research 2016: A Presentation by Dr. Jody Corey-Bloom from Gene Veritas on Vimeo.

‘A life-long Holocaust’

Still pondering the exhausting moments of October 24, the next morning I was jolted by a powerful comment on my September 15 article "Dreams for a better future: an opportunity we Huntington’s disease people and our families are denied."

The words speak for themselves:

I am in nearly the same situation as the author of this blog. I am now 59 years old and will be 60 in February. Huntington's Disease killed my father & half my family. My sister is dying now in an extremely horrible case where she is burning so many calories that she looks like a skeleton. I have actually had continual muscle contractions all my life since I was about 25 years old, but nothing else. I've been able to live my life and work and function normally (although, I never married or had children). I've wondered my entire life when it would happen to me. Now, at almost 60, I wonder if this is it, and this is all that will happen, and I wonder why. Why did it kill so many people in my family and not me?

I can't really imagine a more horrible experience in a family. I had a doctor once tell me that he had never seen a single person come out of a Huntington's family who wasn't emotionally damaged for life. He described it as a kind of "life-long Holocaust" where you live your entire life watching one persona after another die the most horrible deaths, and unlike the Jews, you don't have anyone you can blame.

I have cried a few million tears in my life, but now approaching 60, I am able to see some things I could not have seen years ago. I look at myself and my family, and I realize that none of us are the people we would have been without this disease. We all became so much "more." We all learned to truly "see" people, to feel empathy with all people suffering, to appreciate all the small moments and the good things in life. We all embarked on a life-long journey to find meaning and to understand our place and purpose in this world. And, when I look around and see all the various kinds of suffering in this world, it makes me think that maybe this has always been the reason and the purpose for it – to cause us to become "more."

These words not only rekindled my desire to defeat HD; most importantly, they also inspired compassion.

Sarah falls to HD

A diagnosis for Huntington’s disease forever changes the lives of affected individuals and their families.

Without an effective treatment, thousands of people around the world continue to succumb to HD.

On October 17, Huntington’s took the life of 37-year-old Sarah Brook of Tamworth, England.

Many in the HD community became familiar with Sarah’s struggle on “Sarah’s Dream,” a Facebook page run by her mother Gail and stepfather Jeff. “Sarah’s Dream” is also the name of a motorcycle the family used in the effort to raise funds and awareness. According to Gail, Sarah’s first symptoms appeared in her early twenties. Sarah's father died of HD at the age of 35.

“This is the saddest time of my life,” Gail wrote on Facebook. “Nothing could compare to the loss and heartbreak I feel. […] It's the wrong way round, this shouldn't be happening. I can't bear the thought that I'll never see her again. I want to hold her so much.”

Sarah’s funeral took place on November 3. Her body was cremated.

“We've put her near the TV,” Gail wrote of Sarah’s ashes, held in an urn. “She's always liked her telly, and [we] will scatter them in the place she chose, when we feel ready.

Despite their enormous loss, Gail and Jeff will continue in the fight against HD.

“We've been married for 33 years and he adopted Sarah, knowing that she was at risk of HD,” Gail wrote me in a Facebook message. “We have agreed to carry on with Sarah's Dream, in memory of Sarah.”

We need to find a way to wipe away the tears of HD. Perhaps we can be heartened by the profound dedication to the cause displayed by Sarah's family.

Above, a collage of photos of Sarah Brook. Below, Jeff Brook riding Sarah's Dream (family photos).

Billboards: an old – but also new – way of projecting the Huntington’s disease cause

The San Diego Chapter of the Huntington’s Disease Society of America (HDSA-San Diego) has taken its advocacy to a new level with billboards announcing a chapter fundraiser, the Fifth Annual Team Hope Walk on April 10.

At five high-traffic locations in the San Diego area, the billboards went up on March 7 and will remain up for 30 days, according to Misty Daniel, the HDSA-San Diego vice president. Misty originated the billboard idea, the first time it’s been used in the San Diego chapter, one of the most active in the country.

The billboard calls on the public to “register today” for the Hope Walk at the website www.TeamHopeWalk.com.

The HDSA-San Diego 2016 Team Hope Walk billboard on Mission Gorge Road south of Twain Avenue in San Diego (photo by Gene Veritas, aka Kenneth P. Serbin)

“As a group, we’re not very good advocates for ourselves,” Misty said of the HD community in a phone interview. “This disease affects as many people as cystic fibrosis, but you’ve heard of cystic fibrosis.”

Huntington’s disease still lacks such instant public recognition, Misty observed.

“It’s not just that it’s a rare disease, but it’s rarely known,” she explained. “I’m tired of educating physicians and telling people that I have this in my family and them not having a clue about what it is.”

Misty said she wants the billboards to bring awareness of HD to the “point where I say, ‘I lost my mom to Huntington’s disease,’ and they’ll say, ‘I know what that is. I’m sorry.’ It’s getting harder and harder to use Woody Guthrie as my person to reference. More and more people are saying: who is Woody Guthrie?”

Guthrie – one of the greatest American folk singers of the 20th century and the composer of “This Land is Your Land” – died of HD in 1967, at 55. That year his wife founded a network of HD support groups and advocates that would become HDSA.

Billboards are a traditional, “old media” way of generating publicity. However, in this case they project a 21st-century imperative: the need to cure neurological diseases. They reflect the ongoing high level of creativity in a community facing one of the most devastating of those disorders (click here to read more).

A passionate, resilient advocate

At 38, Misty is a passionate, resilient veteran of the HD cause.

She became an advocate for HDSA-San Diego when she was just 19. She lost her mother Rosie Shaw to the disease in 2007. Misty tested negative for HD two years later. A brother with HD died in a motorcycle accident, losing control of the vehicle perhaps because of the disease. Her sister Brooke, 46, has HD symptoms. Three other siblings remain untested.

Misty speaks at HD events such as the chapter’s second annual convention, held March 5. (I’ll have more on this event in a future article.) She advocates for the passage of the Huntington’s Disease Parity Act, a bill in Congress to update the Social Security Administration’s long outdated definition of HD as a disease causing only involuntary movements. That situation prevents people affected by psychiatric and cognitive symptoms from qualifying for Social Security disability payments. In addition, she assists drug makers involved in HD clinical trials and other HD research.

Misty also helps organize the local Hope Walks. About a year ago, she started thinking about the possibility of billboards.

“HDSA does not spend any money on advertising – not nationally or locally – because we want as much of the dollars raised to go to HD care, advocacy and research as possible,” HDSA CEO Louise Vetter said in an e-mail. “This is an important policy and principle in how we steward the funds raised for our fight.”

So Misty and other advocates raised the $2,000 needed to pay for the billboards. One of Misty’s untested siblings donated $1,800. The Clear Channel media company, the owner of the billboards, charged a nonprofit rate.

She pointed to key participants in the effort: HDSA-San Diego board secretary Jamie Jirik; HDSA staffer Stephanie Alband; former Clear Channel Radio employee Sherry Toennies; and board member Paul June, whose branding firm designed the billboard.

“At the end of the day, this is what HDSA-San Diego is all about: grass roots efforts,” Misty said.

Misty Daniel at the 2014 San Diego Hope Walk (photo by Gene Veritas)

Catching families’ attention

“Huntington’s disease has carried a stigma for so long,” Misty said of the need for the billboards. “We continue to perpetuate the stigma generation after generation.”

The fear in HD families is “overwhelming,” she continued. That fear “is not only palpable but it is a real reason to control how we talk about” HD and share about it.

However, Misty has sensed a change in the community.

“With the launch of the Internet and social media, more and more people are confident about sharing their stories and talking publicly about Huntington’s disease,” she said. “This is what’s going to whittle away that stigma, more and more people talking about it.”

Misty hopes that the billboards will catch the attention of other HD-affected families in the San Diego area who until now have had no contact with the chapter, events, and support group.

According to Vetter, advocates in the Upper Midwest used billboards in the early 2000s. In addition, some national ad campaigns have run in magazines like TIME.

“Billboards are a great way to raise visibility of the Team Hope program and HD to the broad San Diego community,” she said. “They can spark curiosity to learn more about HD, as well as fuel engagement to take part in the Walk.

“Additionally, these billboards can validate the participation of those who are already part of our fight to help HD families. When you see an ad or a billboard about something you are involved in, it breeds pride and a deeper connection to the cause. For the HDSA San Diego Chapter, this can mean new volunteer leaders and the ability to have a greater impact.”

More than a logo

To stir broad interest, the billboards portray a family at a previous Hope Walk in another city.

Unidentified, the family has a sign with the words “I’m walking for: Ray Jacks – our brother.” (On the billboard it’s not clear whether the surname is “Jacks” or “Jackson.”)

Another angle of the billboard (photo by Gene Veritas)

As of this writing, I was unable to identity neither the family nor the person for whom they were walking. Regardless, Misty stressed that including the photo was highly important. (All HDSA walkers sign a waiver permitting use of their photos, she noted.)

“We wanted to make sure that the billboard had actual people on it, because this is a disease that has been faceless for too long,” she said. “We felt that if it had only a logo, we would be doing the Huntington’s disease community a disservice.

“No, this is not a clipart. It’s a real family.”

Later Misty hopes to reach out to the family.

“I want them to know they’re on this billboard,” she continued. “This generation is walking on behalf of those who can no longer walk for us.”

It strives for a cure, she said, to prevent another generation from suffering from HD.

Please support my family’s team, the "Serbin Family Team," in the 2016 HDSA-San Diego Hope Walk by clicking here to join us and/or make an online donation.

Featuring music, prizes, food, family fun, and more, the walk will take place at Coronado Tidelands Park, 2000 Mullinex Drive, Coronado, CA, 92118. Walk registration starts at 8 a.m. and the event at 9 a.m. Proceeds benefit HDSA.

A selfie of Gene Veritas, aka Kenneth P. Serbin, at the billboard

Sharon’s inspirational journey with CrossFit in the fight against Huntington’s disease

With her indomitable spirit Sharon Shaffer has not given up the fight against Huntington’s disease, despite a decade of struggling with symptoms that forced her to quit her job and stop driving, and which hamper her ability to speak.

On December 7, Sharon starred in her own HD educational fundraiser, “Sharing Sharon’s CrossFit Journey” (#CureHuntingtons and #SharingSharonsJourney). The event raised nearly $2,000 to support Sharon and her family’s plans to hold a much larger fundraiser for the Huntington’s Disease Society of America (HDSA).

More importantly, it gave several dozen participants and onlookers in the CrossFit gym insight into Sharon’s practice of regular, intense exercise as a strategy for slowing the inevitable progression of her untreatable condition.

“I believe that CrossFit has helped me bounce back from major falls and accidents that I have had,” Sharon, assisted by daughter Alexa, said in a speech before CrossFit trainers led her and participants through a regimen of exercises. “Although my balance, swallowing, and speech are worsening, I am confident that without exercise my symptoms would be worse.”

You can watch Sharon tell of her struggles with HD and her involvement with CrossFit in the video below, with an introduction by Lee Razalan, the owner of Stay Classy CrossFit, the gym that sponsored the event.

A rigorous workout

The trainers at Stay Classy CrossFit, a central San Diego outlet that is part of a national network of gyms, designed a program for the Shaffers’ event. It was geared specifically for HD-affected individuals.

Along with the other participants, I jumped on a box, lifted weights, swung on a pull-up bar, and did pushups and squats.

We rotated among the five exercise stations every 90 seconds, moving through the entire sequence three times over about 17 minutes.

The #CureHuntingtons WOD (workout of the day) (photo by Taylor Shaffer)

I found the workout very rigorous. Indeed, I had to stop several times to catch my breath.

Over the next couple of days, my muscles felt considerably sore. But it was a good soreness, the kind you get from using neglected muscles. Today one of my doctors gave me the go-ahead to stick with CrossFit, but only as long as I don’t overdo it.

It occurred to me that HD people and presymptomatic gene carriers such as I need more events such as this to help us refocus on exercise and holistic approaches to the disease.

For Sharon, CrossFit has not just served to stimulate her brain and strengthen her muscles, but also linked her to a whole new network of friends who literally support her as she sometimes stumbles through the exercises.

In addition to Stay Classy Crossfit, the event received support from Lululemon and Sushi on a Roll.

You can watch the CrossFit participants, including me, in the videos below.

Racing Across America – again

The Shaffers put on “Sharing Sharon’s CrossFit Journey” in preparation for their fourth participation in the Race Across America (RAAM), a coast-to-coast, non-stop bicycle race from the pier in Oceanside, CA, to the boardwalk in Annapolis, MD. The Shaffers’ participation in the June 2015 event requires donations in kind and funds to cover such costs as a motor home to accompany the riders.

The Shaffers’ “Team 2 Cure Huntington’s Disease” participated in RAAM in 2006, 2007, and 2010, anchored by Renato. He also led a team in the Race Across the West in 2008.

These and affiliated events such as annual RAAM golf tournaments have raised more than $110,000 for HDSA. “Team 2 Cure HD” has also increased awareness about HD across the nation.

In addition to Renato, the 2015 team includes RAAM veterans John Sylvester and Jason Tate and newcomer Mikel Clementi. Their 2015 goal is to net $40,000 or more.

Renato Shaffer (photo by Gene Veritas)

Inspiration

Renato and his three team members have completed past RAAM events in less than ten days. To call RAAM grueling is a gross understatement, especially since Renato turns 50 today, December 9.

In their RAAM donation request letter, the Shaffers describe the race as “both physically and emotionally taxing” but that pales before “the realities that HD patients suffer from on a daily basis. Over the past ten years our family has changed drastically with the progression of Sharon’s symptoms. Nonetheless we live with purpose, hope and gratitude. Our purpose is to shed light on HD, to maintain realistic hope despite Sharon’s circumstances and always remain grateful for the selflessness of others who have helped us.”

Renato, the RAAM team members and support staff, the extended Shaffer family, and supporters and friends of the HD cause draw deep inspiration from Sharon.

“My goal […] is to try to succeed at things that people would deem impossible given my condition,” said the 48-year-old Sharon, who has practiced CrossFit for five years. She believes that all HD-affected individuals can discover an activity or hobby for keeping active.

“Huntington’s does not define us,” she said. “It’s just another fork in the road.”

At the conclusion of the CrossFit program, we participants all gathered around Sharon and one of the trainers as he reflected on the purpose and the lessons gained.

I touched Sharon’s shoulder. She and her thoughtful event for HD families had motivated me to recommit to exercise and healthy living as I face my own inevitable onset. Once again, I acquired strength from my HD sister.

We all put our arms in the middle of the circle. Then we raised them as we cheered: “Cure Huntington’s!”

(Stay tuned to this blog for updates on RAAM 2015 and how you can help. Scroll down for other photos from Sharon's event. Photos by Gene Veritas.)

Race Across America veteran and 2015 repeat participant John Sylvester

2015 Race Across America initiate Mikel Clementi

Alexa (left) and Taylor Shaffer

Sharon Shaffer and mother Fran Walker

Andrew Herndon, coordinator of the HDSA Center of Excellence for Family Services and Research at the University of California, San Diego

HD advocate and support group member Amy Anderson (left) and HD support group facilitator Sandy Jerkins

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 can’t 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.”