Upbeat Huntington’S Affliction Film, Featuring Undaunted Family, Aims For X 1 M K Viewers

The Longest Journey – a novel feature-length documentary cinema well-nigh Huntington’s illness – portrays the undaunted Shaffer solid unit of measurement inwards an epic battle.

In June 2015, for the 4th fourth dimension inwards 10 years, Renato Shaffer of San Diego led a squad of iv men inwards the Race Across America (RAAM), a non-stop wheel race from the pier inwards Oceanside, CA, to the boardwalk inwards Annapolis, MD. (In 2008, Renato likewise led an hard disk squad inwards the Race Across the West.)

Their goal: to heighten awareness well-nigh hard disk together with back upward the endeavor to salvage Renato’s 48-year-old married adult woman Sharon together with 30,000 other Americans from the devastating, fatal neurological disorder together with forbid it from smasher the Shaffers’ 2 untested, at-risk daughters, Alexa, 25, together with Taylor, 20.

Beautifully shot together with directed past times ascension filmmaker Nathan Apffel together with alongside inspirational audio pattern past times Brandon Puda, The Longest Journey captures the heights together with depths of the 3,200-mile race, which riders must consummate inwards 8 days or human face upward disqualification.

“My motivation is, yeah, I’m going to endure for 7 days, but somebody alongside hard disk – they’re suffering until the end,” 50-year-old Renato says inwards the film. “After 7 days, I acquire off my bike, I’m feeling good, but alongside HD, each twenty-four hours makes it worse, gets worse, gets worse, until the end, you’re only a shell of the soul you lot used to be.”

However, equally inwards the RAAM, the Shaffers haven’t given upward the struggle against HD. Along alongside Nathan, they wish the cinema to assist convey a cure.

In contrast alongside most presentations of hard disk I’ve witnessed inwards the 2 decades since my mother’s diagnosis for the disorder, this oftentimes emotionally wrenching cinema left me, an hard disk cistron carrier, feeling upbeat.

Seeing Sharon strive to overcome hard disk alongside the assist of workouts together with the RAAM squad compete inwards an consequence that would challenge fifty-fifty the best-trained Olympic athletes, I felt newly motivated to exercise, a scientifically proven agency to promote encephalon health.

I was likewise inspired to renew my commitment to advocacy.

Huntington’s is so cruel. It was refreshing to run across someone offering a to a greater extent than hopeful interpretation.

Nathan, inwards his role equally narrator, indicates this intention at the outset: “And you lot powerfulness live sitting at that spot thinking, ‘Great, unopen to other moving-picture demonstrate well-nigh getting older, the historic menses clock spinning faster, together with the happiest times were when you lot were a kid together with hadn’t faced the music yet.’ Well, I’m hoping for all our sakes this movie’s a flake bigger than that.”

You tin flame scout the cinema trailer past times clicking here.

Marketing the film

Nathan together with producer LeeJ Razalan, a RAAM supporter together with Shaffer solid unit of measurement friend, held a private screening of the cinema for friends together with solid unit of measurement members inwards San Diego on May 19. About 200 people attended the screening, which likewise served equally a fundraiser.

In an interview afterwards the screening, Nathan said he expects to issue the cinema inwards the side past times side iii to vi months. His previous films together with programs choose appeared on Netflix, Bravo, Hulu, together with ESPN, together with he hopes to identify this cinema alongside an online streaming site, aiming for 10 i K 1000 viewers.

Nathan, LeeJ, together with the Shaffers wish to educate equally many people equally possible well-nigh HD, together with to heighten funds for research.

The professional person lineament of The Longest Journey, its potentially broad viewership, together with its positive outlook could acquire inwards a successful awareness-building vehicle.

Renato Shaffer (left), Sharon Shaffer, LeeJ Razalan, together with Nathan Apffel (photo past times Gene Veritas, aka Kenneth P. Serbin)

Fighting until she can’t fight

We larn inwards the 75-minute documentary that Renato married his high schoolhouse sweetheart despite knowing her manful soul parent had hard disk together with that she powerfulness choose inherited the genetic defect.

“She’s fighting a skillful fight,” he says. “At this stage, her manful soul parent was already pretty far gone. She’s 48 now, together with at to the lowest degree she tin flame all the same speak, she tin flame all the same communicate. She all the same has a trivial flake of liberty to do what she needs to do, equally opposed to her father, who pretty much gave up.

“When he institute out that he had it, he tried to kill himself a brace times. Not Sharon. She’s fighting until she can’t struggle anymore.”

“It scares me that my whole family’s out there,” Sharon, her oral communication slurred past times HD, says well-nigh the dangers of the long race, which originated inwards 1982. “There’s been deaths. There’s been accidents, so many accidents.”

Some teams “never come upward dorsum the same,” she adds. Already past times Colorado, 24 teams had to quit the 2015 race, unusually grueling because of extremely hot atmospheric condition inwards the West, equally shown inwards the film.

In past times races, Sharon helped equally a back upward squad fellow member on the road. In 2015 hard disk kept her home. She flew to Maryland alongside other solid unit of measurement members on the final day.

Valiant people

Everybody inwards The Longest Journey is on a personal mission against HD, including Nathan, whose HD-affected brother-in-law has 2 young, at-risk children.

Nathan skillfully interweaves scenes from the Shaffer team’s spectacular athletic functioning alongside interviews alongside Sharon, Renato, his teammates, together with the Shaffer daughters together with their boyfriends.

Also interviewed is Sharon’s physician, Jody Corey-Bloom, M.D., Ph.D., the managing director of the Huntington’s Disease Society of America (HDSA) Center for Excellence for Family Services together with Research at the University of California, San Diego. Dr. Corey-Bloom explains the causes together with symptoms of Huntington’s, providing a counterpoint to scenes inwards which nosotros run across Sharon speaking or fighting to overcome her condition.

As disabling symptoms gradually appear, hard disk patients “absorb” many “blows,” Dr. Corey-Bloom says.

“These are immature people struck downward at rattling productive points inwards their lives,” she adds. “There’s a valiant nature to people.[…] People are only so amazing inwards the agency they direct hold it together with bargain alongside it together with only attempt to hold going on.”

The wish to survive

The Longest Journey bravely ponders HD’s endpoint: death.

“I intend the hard matter for people to […] utter well-nigh is that it’s fatal,” Dr. Corey-Bloom comments.

However, The Longest Journey doesn’t dwell on death. On the contrary, it focuses on the RAAM, the Shaffers’ efforts to defeat HD, together with their large network of supporters.

Sharon is living alongside her HD, together with her solid unit of measurement along alongside her, to the greatest extent possible.

Sharon together with her solid unit of measurement do CrossFit exercises inwards the Shaffer garage, converted into a gym.

Nathan projects Sharon’s wish to hold upward together with her family’s hopes for a cure past times focusing on their expressions during interviews together with moments of the RAAM.

“I all the same feel: what an amazing lady,” says Dr. Corey-Bloom, recalling that Sharon earlier hard disk attack was articulate together with employed past times a drug company. “She is tough. I am certain at that spot must live days when she form of thinks, ‘Why am I fifty-fifty bothering?’ She’s out there. She campaigns for things. Renato makes that grow.

“These are 2 people who, at to the lowest degree inwards San Diego, everyone looks upward to.”

Sharon together with Renato (photo past times Gene Veritas)

Good-natured together with humorous

Nathan balances the many hard challenges of RAAM together with the struggle against hard disk alongside moments of sense of humor together with optimism.

“It’s exclusively the halt of the commencement day, together with I didn’t know a trunk could sweat equally much equally I’ve sweat inwards the final few hours,” he observes. “Our vehicle’s already starting to olfactory belongings similar day-old beef stroganoff.”

Alexa good-naturedly refers to sis Taylor equally a “neat freak” who bought “ten Glade air fresheners” for the 2 vans the riders consume together with slumber inwards when off the road.

“Mother nature trounce us upward a trivial bit,” observes teammate Jason Tate, 45, well-nigh the winds together with heat.

These together with other moments made the audience laugh.

Wisdom on HD

Through the interviews alongside the Shaffers together with their friends, The Longest Journey offers much wisdom for the hard disk community.

The documentary exemplifies how families tin flame unite – non split upward – when faced alongside the myriad challenges of HD. It likewise demonstrates how people similar LeeJ, a friend alongside no blood connective to HD, render crucial back upward for the cause.

As hard disk advocacy, The Longest Journey tin flame potentially depict out of the “HD closet” those individuals together with families needed equally volunteers at events together with inwards query studies together with clinical trials.

Projecting optimism

Like The Lion’s Mouth Opens, Removing the Mask, together with other films well-nigh HD, The Longest Journey offers a unique perspective.

After the screening, unopen to attendees had tears inwards their eyes. However, the audience likewise applauded enthusiastically.

In talking alongside the audience, Nathan together with LeeJ projected optimism.

I believe that optimism is indeed the film’s most of import quality. I listened alongside corking involvement to Nathan together with LeeJ’s recollections together with their plans to attract viewers.

They recalled how the projection was born afterwards Nathan met Sharon, who was wearing a RAAM t-shirt, met at the 2015 HDSA-San Diego Hope Walk.

“Everything was serendipitous upward to today,” said Nathan.

He explained that a cinema similar this unremarkably costs $300,000 to $500,000.

“The coolest purpose is that nosotros made this i for 20,000 bucks,” he said. “Don’t acquire me wrong. There’s a lot of blood together with sweat equity position into this.”

Noting that he shot the cinema inwards 4K (ultra high-definition) resolution/high dynamic range, the side past times side generation TV technology, he added: “We’ve future-proofed this cinema for the side past times side 10 years.”

As of that evening, Nathan together with LeeJ all the same needed $8,000 to accomplish their $20,000 basic budget. In an email the side past times side day, LeeJ announced that donations from the screening amounted to $9,000.

LeeJ alongside racing cycle to live raffled to back upward the hard disk receive (photo past times Gene Veritas)

A raw together with authentic story

They volition straight off focus on marketing the film, including cinema festival submissions.

“This is my strongest [film], hands down,” Nathan told the audience. “I intend it has the catch together with the quality. I wish to opened upward or unopen Sundance or a really, actually large festival.”

LeeJ calls The Longest Journey a “raw together with authentic musical instrument to part the storey of HD.” As a slogan to accompany the film, they’re considering “better together,” a reflection of its emphasis on solid unit of measurement together with community unity.

As Sharon states at the halt of the film, inwards a message relevant for all hard disk families: “My advice would live to only move on to dear yourself together with your family.”

To donate to the Shaffers’ efforts to combat HD, click here.

Renato (left) together with Nathan (photo past times Gene Veritas)

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