Six Cool L.A. Ladies ‘Bare The Truth’ Most Huntington’S Disease, Highlighting An Exceptionally Creative Twelvemonth For Advocacy
From a pie-in-the-face challenge to documentaries to a innovation to lite upward Chicago inward blue, Huntington’s illness activists rose to novel inventiveness inward 2014 inward their yell for to enhance awareness.
One of the most ingenious initiatives, #BareYourTruth, materialized every bit a photograph of 6 naked women advocates from the Los Angeles area, their bodies partially shielded yesteryear placards amongst the letters C-U-R-E-H-D.
Tastefully sexy but haunting, #BareYourTruth captures an essential number for the hard disk community: sick as well as at-risk individuals similar me as well as our families convey struggled to exit the terrible as well as lonely hard disk closet, tell the basis of our plight, as well as focus society’s energies on improved aid as well as the search for remedies for this untreatable neurological disorder.
From left to right, Rachel Giacopuzzi-Brown, Angelica Randall, DeAnna DeNaro, Adriana Venegas, Taryn Renau, as well as Amy Morris O’Keefe (photo yesteryear #BareYourTruth)
The goal of #BareYourTruth is to “share the truth most HD,” explained DeAnna DeNaro, 49, a player inward the project. She lost her half-sister Denise DeNaro to hard disk on Feb 26.
“There isn’t anything fun most Huntington’s – it’s raw as well as it’s bare,” said Deanna inward a vociferation upward interview on Dec 21. “When you’re naked, it’s a rawness, as well as you’re showing everything. If yous tin practise that – to verbalise most something as well as thence raw as well as painful – ‘bare’ agency you’re showing everything. We didn’t desire to state ‘bare your soul.’ We wanted to practise ‘bare your truth.’ Each ane of has a truth most Huntington’s. When yous verbalise most the truth, beingness naked is showing everything.”
Denise was 59 as well as had ii children, at in ane lawsuit immature adults. In 2001 DeAnna’s half-brother Donald DeNaro died at 52. He was believed to convey HD. He had 3 children, today also immature adults. DeAnna, Denise, as well as Donald shared the same father, but Denise as well as Donald had a unlike mother, who had HD. Of DeAnna’s v nieces as well as nephews, only ane has tested for the disease. The number was negative. The other iv stay untested as well as at risk.
Cross-country trips to offering care
For to a greater extent than than a decade, DeAnna traveled an average of v times per yr from her dwelling inward Redondo Beach, CA, to Miami to aid aid for Denise. During that time, she has served on the board of the resurgent Los Angeles chapter of the Huntington’s Disease Society of America (HDSA), the final 3 years as president.
“I would acquire at that topographic point a calendar month at a time,” DeAnna said. “Each phase that she would go inward into, nosotros every bit a trouble solid unit of measurement had to collaborate to evaluate her aid as well as what was the best for her, including her doctors as well as caregivers.”
As a number of her experience amongst HD, 3 years agone Deanna left her career every bit a managing director inward the structure concern as well as opened a caregiving business. She volition proceed inward that patch when she moves adjacent yr to Germany, her husband’s homeland.
DeAnna DeNaro (photo yesteryear #BareYourTruth)
The nativity of #BareYourTruth
Denise’s decease spurred DeAnna to create #BareYourTruth as well as to recruit other women advocates.
“I am non at gamble for HD,” Deanna said. “It does deport on me personally. Those are my siblings, regardless of the fact that nosotros are half-siblings. We were really close.”
The photograph shoot (with services donated anonymously yesteryear a professional person photographer) took identify inward September. On September 28, a re-create of the photograph was auctioned for $200 at the HDSA-LA Team Hope Walk, which netted $76,000 for the organization.
DeAnna witnessed hard disk for the start fourth dimension inward 1990 when she was 24 as well as visited Denise as well as Donald’s woman parent as well as an HD-affected cousin inward a nursing home.
“It was the most horrific thing I convey always seen,” DeAnna said. “I was inward shock. I learned really speedily that I wouldn’t hold out able to aid my sister. It was obvious. I would hold out watching my sis endure as well as drib dead from this disease, which she did. Taking aid of my sis was extremely challenging. I experience compelled to practise this, at in ane lawsuit that my sis is gone.”
Reactions to nudity
DeAnna at start worried whether the photograph was an appropriate shape of advocacy.
“I wasn’t certain of how that was going to hold out perceived,” she confided. However, she speedily adopted a “don’t care” approach because of the urgency of the hard disk cause.
“We form of threw this painting or as well as thence to a lot of people to run across what they would say,” DeAnna said. “Not ane human being said anything sexual most the photograph. And I recall they were beingness honest.”
So far, Deanna has gotten only positive feedback: “If yous await at the faces, it’s as well as thence gratifying to run across the combination of the hurting of hard disk as well as our determination to practise something most it. I recall people are seeing that. They are reacting to what they run across inward the photograph, non that we’re naked. Talking most Huntington’s illness tin hold out really hard for many people. That’s how #BareYourTruth came out.”
DeAnna’s as well as beau advocate #BareYourTruth advocate Rachel Giacopuzzi-Brown’s husbands at start balked at the thought but, afterwards seeing the photo, “totally loved” it, DeAnna said.
A terrifying reality
In early on Oct the women laid a #BareYourTruth Facebook page, where each has explained her connective to HD. Each has added a phrase to the hashtag #BareYourTruth that reflects each's personal storey as well as its broader pregnant for the hard disk community.
“I recall at that topographic point is nevertheless the component of me that is terrified to know the truth for fright that I wouldn't hold out strong plenty to grip it,” Adriana Venegas wrote most her determination to examination for the hard disk gene. “#BareYourTruth, fifty-fifty if it terrifies you.”
On Nov 3, Adriana received her result: she tested positive for the gene. In an e-mail, she told me that she is nevertheless mentally processing the result.
“You are my sis inward HD,” I wrote her. “I am gene-positive, too. I am hither for whatever yous need.”
Adriana Venegas (photo yesteryear #BareYourTruth)
Seeking media attention
“I am at in ane lawsuit inward my early on 40s, amongst ii immature children as well as I am at gamble for Huntingtonʼs disease,” wrote Amy Morris O’Keefe. “#BareYourTruth for those at risk.”
“Every 24-hour interval I scout my one-time Marine hubby struggle amongst retention issues, myoclonic seizures, emotional instability, cognitive function, etc.,” wrote Rachel, who used the phrase “BareYourTruth for your children.” “As these symptoms became harder to hide, nosotros struggled amongst how to interruption the word to our 3 children. In the goal nosotros decided that because of the behaviors he was exhibiting it was improve to tell them the truth than to convey them recall that Daddy didn't dear them. Ever since that 24-hour interval they convey been amazing amongst him.”
Other women convey shared their stories as well as photos. DeAnna as well as her collaborators convey stimulated farther give-and-take amongst a serial of “truths,” or brief commentaries, most HD. So far, they convey published nearly 60, posting several times a week.
Deanna calculated that through the page her storey has reached to a greater extent than than 14,000 people.
#BareYourTruth hopes to attract to a greater extent than media attention. The grouping is producing a two-minute populace service proclamation that volition include a message from HDSA CEO Louise Vetter, DeAnna said. They innovation to post the video on Videolicious.com, amongst the promise that it volition acquire viral.
Catchy initiatives
“Six really cool L.A. ladies,” I texted a friend most the #BareYourTruth initiative.
#BareYourTruth echoes yesteryear hard disk awareness-building efforts such every bit the “faceless faces of HD” projection created yesteryear James Valvano, ane of the seeds inward the creation of the advocacy arrangement Help for hard disk International.
In 2014, other thought-provoking as well as catchy initiatives emerged.
At mid-year, HD-affected author as well as blogger Sarah Foster Parker produced an interesting twist on the famous ALS Ice Bucket Challenge – which raised $115 1000000 inward a thing of weeks – amongst the creation of the HD Pie inward the Face Challenge. This endeavor increased hard disk awareness on Twitter as well as other social media every bit good every bit donations to the hard disk cause.
HDSA’s Illinois Chapter has started a petition drive to convey several of Chicago’s major buildings lit upward inward blue, the organization’s official color, during hard disk Awareness Month inward May 2015 (click here to read more).
Many other ideas abounded inward 2014, besides numerous to exceptional here.
Informing the police describe most HD
Josh Bane, the nephew of Jeffrey Bane, a West Virginia HD-afflicted human being roughly handled yesteryear the police describe every bit he begged for help, started a Justice for Jeffrey Bane page on Facebook.
Disturbed yesteryear the online video of Jeffrey Bane’s mistreatment as well as the ongoing mishandling of hard disk patients yesteryear police describe officers, a grouping of hard disk advocates laid an data booth at the 121st Annual International Association of Chiefs of Police Conference inward Orlando, FL, Oct 26-28.
Some 250 individuals, most amongst no prior cognition of HD, obtained data at the booth. (Click here to read more).
Josh Bane (personal photo)
A dance, a twitch, as well as a lion’s mouth
The yr brought the loose of three documentary films most HD. In January, hard disk patient as well as activist Chris Furbee’s 85-minute Huntington’s Dance premiered at the Slamdance Festival inward Park City, UT, winning a jury special refer for “most compelling personal journey.”
Stanford University educatee as well as hard disk advocate Kristen Powers launched her brusk celluloid Twitch, which chronicles her journeying to testing for HD. Kristen is currently asset private screenings of the celluloid for the hard disk community. (I volition review the film.)
Director Lucy Walker lately released her brusk documentary, The Lion’s Mouth Opens, most filmmaker Marianna Palka’s determination to examination for HD. The film, which volition seem on HBO inward outpouring 2015, has been short-listed for an Academy Award inward the short-subject documentary category (click here to read more).
Kristen Powers discussing Twitch inward San Diego on Oct ix (photo yesteryear Gene Veritas)
Scientific progress, but urgency for a cure
Scientists made immense progress on the search for treatments, including the proclamation yesteryear gene-silencing clinical trial inward the start one-half of 2015.
The CHDI Foundation, Inc.,the non-profit virtual biotech focused exclusively on the evolution of hard disk treatments, is preparing to sponsor the landmark Tenth Annual hard disk Therapeutics Conference inward Palm Springs, CA, inward February.
Noting the legal existence of assisted suicide inward some jurisdictions as well as also the utilization of non-approved, nevertheless experimental drugs inward the race to stave off a worldwide Ebola epidemic, hard disk advocate Andy Meinen wondered why hard disk patients could non have potential drugs nevertheless undergoing testing.
“Allow the dying to determine which risks they volition conduct for themselves,” Andy wrote on his Facebook site. “Ebola is hell, as well as thence is HD, give us our treatments now.”
He added inward a Facebook message to me: “Once adequately informed of the risks inherent to experimental treatments, patients should convey access to those drugs without interference from regulators.”
That’s a controversial idea. (I volition explore the context as well as implications of Andy’s ideas inward a time to come article.) Nevertheless, Andy made a valuable observation most how clinical protocols mightiness involve adjustment every bit both the challenges of illness as well as the potential of scientific discipline evolve.
In 2015, the hard disk community volition in ane lawsuit once again involve creative, sharp-thinking advocates to drive dwelling the demand for improve aid as well as a cure.
As I go inward my eleventh yr every bit an hard disk blogger, I'll practise my best to written report on novel initiatives.
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