By MIKEY HIRANO CULROSS
Rafu Staff Writer
When the 2019 World Parkinson Congress gets under way Tuesday in Kyoto, a heartfelt display will carry messages of hope within its craft, wishes and prayers from around the globe.
“The three of us were sitting around at my house doing origami, I think it was a lunch or something,” Naomi Estolas recalled about a summer day two years ago. “I had my origami book open, and the subject of folding cranes for my wedding came up.”
Estolas was sharing some time with friends Amy Carlson and Clara Kluge, with whom she shares the progressive neurodegenerative disorder known as Parkinson’s disease. For those in the early stages of the disease that has no cure, fine motor exercises like origami can have help maintain daily physical function.
This friendly gathering came to mind about a year later, when Estolas surprised her husband with a night out to see the band Hiroshima, at The Rose in Pasadena. The couple had their first date at one of the jazz group’s concerts years ago.
Also at the show was Carlson, and when Hiroshima launched into their popular song “Thousand Cranes,” that summer afternoon of papercraft came rushing back.
“We just looked at each other and thought, ‘That’s it. That’s a great idea,’” Carlson said.
Along with Kluge, the trio set about creating a foundation known as Soaring With Hope, a support group that seeks to spread encouragement through art and creativity to those battling Parkinson’s.
The centerpiece of their efforts in Kyoto will be umbrellas adorned with strings of origami cranes. Initially, the goal was to fold 1,000 of the tiny paper birds for the project.
“I had this idea to go past 1,000,” Estolas said. When you have Parkinson’s, you start to lose your fine motor skills. There’s mindfulness to do origami and just practice, and hopefully, you’ll be able to fold a crane on any given day. So we were just doing this, and being half Japanese, I said, ‘Wouldn’t it be neat if we had 10,000 cranes?’”
As much as she loved the idea, Carlson was wary of the physical challenge involved.
“I thought, that’s crazy,” Carlson remembered. “We three have Parkinson’s, and were not going to fold a thousand, let alone 10,000. But she became all fired up with this idea, making them with messages, and I became all fired up as well.”
The key to the spirit of the project, Estolas explained, was involving as many hands – and hearts – as possible.
“There’s a purpose here. It’s to raise global awareness and give hope to people in the Parkinson’s community,” she said. “So we reached out to people in our community, people in the Parkinson’s community, not only here, but all over the world.”
Communicating through personal relationships and via social media, the word spread about the project and the goal, and before long, little paper cranes, tagged with messages of hope and support, were coming into form in some 40 countries around the world.
Most of the cranes were created in California, with nearly half having been folded by various groups at the San Fernando Valley Japanese American Community Center, where Estolas is a member of a taiko troupe.
The trio arranged to visit schools, where they showed students not only how to do the classic Japanese craft, but also how those with Parkinson’s are simply regular people with an additional challenge in their daily lives.
“It’s great about kids, because they’ll go home and tell their parents about what they did in school today, and they’ll pass on the knowledge they gained about Parkinson’s,” Carlson said.
Support as well as packages of cranes flew in, with one particular delivery bolstering the creative energy of the project.
“The three of us were together at my house when we received a box from Germany,” Estolas said. “We got to open it together, and there were hundreds of cranes inside.”
When the time came to begin organizing the cranes to create their display, Estolas, Carlson and Kluge had eclipsed their original goal, collecting more that 16,000 origami cranes, many with messages of hope and love attached.
Not all of the cranes will make an appearance in Kyoto, but the universal message they carry will be clear.
“Hope is universal, and we’re all in this together,” Kluge said.
Born in Monterey, Estolas has a poignant connection to the thousand cranes legacy. Her grandmother, Hatsue, was one of the more than 300,000 who died as a result of the atomic bombing of Hiroshima on Aug. 6, 1945.
One of those hibakusha was Sadako Sasaki, who set about folding 1,000 origami cranes as a symbol of peace, before she died of leukemia caused by radiation exposure at the age of 12.
Carlson was raised in Greendale, Wis., and is a former construction program manager who worked on the building of the Giant Magellan Telescope, the huge astronomical project under way in Chile slated to be completed in 2025. She teaches twice-weekly dance and movement classes for those affected by Parkinson’s.
“Parkinson’s is a giant balancing act, taking the medicine at the right time, getting my exercise, and doing what I need,” she explained. “I teach those classes, so I will show up to make myself work out.”
Kluge, a native of Toronto, retired from her work as a special education teacher due to her Parkinson’s. She now focuses her energy on art projects and is planning to direct a documentary.
The World Parkinson Congress is a triennial international forum aimed at sharing dialogue on the latest scientific discoveries, medical practices, and caregiver initiatives related to the disease.
Estolas and Kluge will attend – the disease makes distant travel difficult for Carlson – and their aim is to inject hope into what for many can often seem like a hopeless situation.
“It can be easy to fall into depression, worrying about the future, about how long I’m going to live or if I see people in a wheelchair,” Kluge said. “So hope takes on huge importance.”
Estolas admitted it can be a daunting challenge at times to remain positive.
“That’s hard, but that’s it, that’s why we do this project,” she said. “All three of us are involved with projects aimed at bringing hope to people with Parkinson’s.
“If we can reach only one person, that’s huge.”
The fifth World Parkinson Congresses runs June 4-7 in Kyoto. Visit wpc2019.org for more information.
The Soaring For Hope website is soaringwithhope4pd.org.