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Pasadena native’s hand disease inspires global 3-D printing challenge

This Maryland native was the inspiration for a contest to develop tools for people with disabilities.

When Pasadena native Brandy Leigh Scott was 7 years old, she brought home a school photo that made her parents notice something peculiar — an unusual circle indented her ring finger's knuckle.

"My dad thought it was the picture until he looked at my hand," said Scott, now 41.

They took her to the doctor and learned that Scott's fingers were receding into her palm. In the years following, she would spend Christmas breaks with her hands wrapped in gauze after surgeries while doctors worked to find a diagnosis.

Around age 10, Scott was diagnosed with Dupuytren's contracture, a rare disease that thickens the tissue of the palm, causing the fingers — usually starting with the ring and pinky fingers — to fold into the hand and stiffen, limiting their use. In Scott's case, the disease, which most often affects European men age 50 and older in at least one or two fingers, is rare and aggressive.

Her hands would gradually close into fists, which meant giving up softball because she could no longer throw the ball, and guitar because she couldn't pick the strings. Now a resident of the Los Angeles area, Scott has lived with limited use of her hands for most of her life.

"It's all I've really known," she said.

But a new contest is challenging the world to change that.

Scott was the inspiration for the Within Reach design challenge, organized by Orange County, Calif.-based MatterHackers, a 3-D printer retailer and software developer.

Running from July 11 to Sept. 6, the contest calls upon professional designers, summer camps, classrooms and makerspaces around the world to design 3-D printed devices that can benefit people who have limited use of their hands. More than 50 designs were submitted as of Wednesday, according toPinshape, the Canadian3-D printing community and websitewhere entries are submitted.

Scott's friend Mara Hitner, the director of business development for MatterHackers, was the first to think of 3-D printing devices to help Scott with daily tasks.

The post-production supervisor drives, though sometimes it's hard to put the car in gear. She types with her thumbs and the big knuckles on her hands, and she uses paper clips to zip her boots. But many other daily tasks, such as turning doorknobs (she has special wing-like devices that make it easier) and sliding her credit card into an ATM, can be a burden.

"Pint glasses are the worst. Coffee cups are terrible. I can't pick either of them up," Scott said, noting that tools as simple as a special cup holder can make a world of a difference.

A plastic cup sleeve with a handle from Bed Bath & Beyond. It was one of Scott's favorite tools, slipping onto most cups and allowing her to get a better grip. She took it with her everywhere, but when she looked for more to buy, they were no longer in stock, she said.

"We could just print you another one," Hitner remembers saying jokingly, but then it dawned on her.

Hitner, 39, consulted MatterHackers director of marketing Dave Gaylord, also a design engineer, to find out what new devices could be printed for Scott. He measured Scott's hands for the designs and printed three devices, including another cup sleeve, a clip that snaps onto beer cans to make them easier to hold, and a pair of forceps to help grip thinner items, like credit cards. He even personalized them with the logo of Scott's favorite team — the Baltimore Ravens — on the sleeve and her initials on tweezers.

"The cup sleeve worked perfectly," she said.

The company shared the designs online and created a video about Scott's condition and the potential of 3-D printing. Soon, another 3-D printing innovator took notice.

Jen Owen, creator of Enabling the Future, an online resource for 3-D printing hand and arm prosthetics, contacted Hitner, and the two teamed up to organize the contest.

"It gives an opportunity for end users to help design their own tools, especially if there are people out there who have grandparents, siblings and children — or even themselves — who have been wanting to get tools like this," Owen said, noting that crowdsourcing designs makes it much easier to share them and "bounce ideas off of" others.

Contests like Within Reach also give the younger generation a chance to use technology to make a difference at a low cost, Owen said.

"Because it's 3-D printing and the plastic is so cheap to prototype with, it really gives them the opportunity to keep pushing the prototype and working it until it's possible," she said.

Ultimaker, one of the largest 3-D printer manufacturers in the country, donated the 3-D printers for the contest's grand prizes, which also include MatterHackers software and other materials, for one adult and one youth winner.

Baltimore makerspaces and youth groups are already thinking of how they can contribute to the contest. Digital Harbor Foundation, which plans maker workshops, along with after-school and summer camp programs for youth, is one of them.

"I imagine there will be attachment-type pieces," said Amber Grimes, the operation manager of the foundation's makerspace.

This isn't the first time Grimes has helped students design tools for people with disabilities. In the past, she's led students in accessibility hackathons where they designed sensor systems for wheelchairs, a game for the blind and devices that would help people survive if they lost a limb in a zombie apocalypse.

Maria Esquela, who serves on the STEM committee for the Baltimore Area Council Boys Scouts of America, is also prepping her Scouts and local volunteers for the challenge.

"It's not just a way to practice leadership and communication. It's problem-solving," said Esquela, who is also a member of e-NABLE, a web-based community that 3-D prints hands and arms for free. In the past, her group has printed and assembled three arms and more than 170 hands.

In the contest's promotional video, Scott and MatterHackers suggested that contestants wrap their hands in tape for an hour or two to envision what it'd be like to not have full use of their hands.

"Think about your grandma who has arthritis or your teacher who is a veteran and has challenges with their hands," Hitner said.

Heidi Miranda-Walsh, an occupational therapist and certified hand therapist at Mercy Medical Center, recommends creating a personalized yet universal device to make gripping everyday items easier. People who have Dupuytren's contracture or forms of arthritis commonly use rubber or foam tubes that fit over jars, doorknobs, toothbrushes — anything that requires a tight grip — but "it doesn't fit all of the nooks and crannies," of the hand, she said.

Contest judges will include Gaylord; "maker" Les Hall, who works with the e-NABLE community; Owen and her husband, Ivan, the co-creator of the first 3-D printed hand; and, of course, Scott.

"I don't really know what I'm looking for. I feel like somebody is going to design something that I didn't even think about," Scott said. "I'm excited to see what everybody designs," especially the youth. "They have no limitations to the imagination."

Hitner agreed, noting the potential impact of a younger generation learning about the "democratization of medicine" — or in this case, the ability to 3-D print custom items at home in a matter of hours for a fraction of the cost of expensive medical prosthetics.

"For the next generation to be learning design and 3-D printing so early [means] when they're adults, and they see something in the world that's not quite right, they can say 'I'll just design something to make it better.' To have that be a native thought is going to absolutely change production and how quickly ideas can be brought into reality," Hitner said.

For Scott, the contest is a chance to bring awareness to Dupuytren's contracture and the need for more accessible devices.

"I'm glad this disease is doing good somehow," she said.

With all the useful devices she hopes will come out of the contest, she added, she's going to need one more thing: a giant purse to carry them.

For more information on the Within Reach design contest, visit matterhackers.com/withinreach.

bbritto@baltsun.com

twitter.com/brittanybritto

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