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Originally published May 19, 2013 at 5:35 AM | Page modified May 19, 2013 at 7:44 AM

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The stories behind Huntington’s disease

Local filmmakers look to raise awareness with a documentary on Huntington’s disease.

Seattle Times columnist

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One October night in 2007, a group of friends from Seattle traveled to New York City’s Webster Hall to make a film about a benefit concert.

The concert commemorated the 40th anniversary of the Huntington’s Disease Society of America, which was founded by Marjorie Guthrie, the wife of musician Woody Guthrie, who died from the disease.

The stage was filled with musicians influenced by Guthrie: Tom Morello of Rage Against the Machine; Steve Earle and the Seattle band Brad, led by Pearl Jam’s Stone Gossard. Actor Tim Robbins hosted the whole thing.

The film was made, but never edited and never shown.

That night, those Seattle friends — Liz Weber, Josh Taft, Cindy Gantz, Kate Bayley and Tadd Sackville-West — decided instead to focus their cameras on some members of the audience. Those living with Huntington’s every day.

“People’s stories were more interesting,” Bayley said the other day, when the friends all gathered at Caffé Vita on Capitol Hill. “It ended up being totally inspiring for everyone involved.”

It took them more than five years, but the resulting full-length documentary, “Alive & Well,” was selected by the Seattle International Film Festival, and will screen at The Uptown Theater at 7 p.m. Wednesday May 22; and at 4 p.m. on Thursday, May 23.

“Alive & Well” tells the stories of seven people affected by Huntington’s disease: Six patients and one researcher determined to find a cure. (Disclaimer: One of the patients is Courtney Blethen Riffkin, whose family owns The Seattle Times).

Huntington’s disease is officially described as a neurodegenerative disease that most often strikes in midlife, and is caused by a mutation in either of two copies of a gene called Huntingtin.

It may also be the cruelest diagnosis. It is incurable, and slow, and strips everything good from the body it lives in: happiness, reason, memory, balance and mobility. Complications include heart disease and pneumonia.

Children watch their parents wither away, knowing all the while they may test for the very same fate.

Not the brightest subject for a movie, but part of the intent is to educate, said Gantz, 43. Not to make the dark theater any darker.

“We didn’t know anything about the disease,” Gantz said. “We wanted to understand it, and use whatever power we had to help get people to understand.”

And they wanted to show the disease in a hopeful light. Researcher Dr. Michael Hayden can see the cure from here. Patients are living their lives to the fullest.

“People said this was the first time this disease has been shown in a way that wasn’t ugly and alienating,” said Weber, 36. “I mostly want families to have a tool to explain what this is, to communicate what they are going through, and for the people who have it to not feel alone, and connected.”

“Alive & Well” is dedicated to Weber’s mother, Mary, who was diagnosed with Huntington’s disease when Weber was 19.

Mary Weber had been behaving so erratically for so long — depression, angry outbursts — that her husband and daughter checked into a hotel for a week one summer, and urged her to get some help.

They thought she would go to a psychiatrist, but instead, Mary Weber went to a neurologist. She knew that her own father had had Huntington’s. She just never talked about it.

She was diagnosed, and her condition degenerated. She died two years ago, at 62.

Ten years ago, Liz Weber took the same, fate-filled test her mother had. In the six weeks she waited for the (ultimately negative) results, she sought out the Huntington’s Disease Society of America.

“I decided to get involved so I could have some feeling of power,” Weber said.

Indeed, at her first meeting, the chapter president announced his resignation, so Weber volunteered for the job, and started connecting with the people whose stories would make up “Alive & Well.”

The filmmakers started by interviewing 22 people at the Guthrie concert. Over the years, they expanded their reach (despite deaths, births and other projects), and never stopped fundraising.

Sackville-West even traveled to Africa and climbed Mount Kilimanjaro loaded down with camera gear, to follow Riffkin on a fundraising trip.

“I love climbing mountains, and I love filming,” he said. “It was a beautiful thing to be a part of. For those of us who don’t know our fate to see those that do, living their lives to the fullest ... Her part resonates hope.”

That hope carried the group through to the end, Gantz said, “Right to the editing house last week.

“It carried us,” she added. “This film has its own energy.”

That energy kept Taft involved — not an easy thing for a guy who has made his name directing short-form film projects, like commercials (Nike, Coca-Cola) and music videos (Pearl Jam, Alice in Chains).

“It’s the most patient thing I have ever done in my life,” he said. “This required a lot of faith in the stories and a belief in the project ourselves.”

It took some restraint, he said, not to craft a conclusion for viewers.

“The only thing they can conclude is to activate some part of their lives. ‘What can I do? How can I help?’

“General compassion is a beautiful motivation,” Taft said, “and that’s what this film is all about.”

Another something good: The film is dedicated to Mary Weber.

“My mother had a really hard life,” Liz Weber said. “And I think the film is a legacy that she can leave.”

Nicole Brodeur: nbrodeur@seattletimes.com.

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About Nicole & Co.

Every Sunday, I bring you a conversation with a local who is doing something great, or a great who is doing something local: media personalities, big thinkers, visiting artists, colorful characters and doers of all kinds.
nbrodeur@seattletimes.com | 206-464-2334

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