Designing a Better Life for People with FOP

Students Develop Practical Tools for Daily Tasks

Professors and students from Thomas Jefferson University are contributing to a new program – The WILL Project – by designing tools to ensure “We Improve Life and Living (WILL) with FOP.”

Dr. Zvi Grunwald, a founding member of the International Clinical Council on FOP, introduced the Thomas Jefferson University team to the FOP community. Through his work at the university, Dr. Grunwald connected with Eric Schneider, assistant professor of industrial design, and others focused on using design in health care and rehabilitation services.

Those discussions led to students inventing practical tools that could make life easier for people with FOP. The goal was to focus on less expensive items for daily use that would provide someone with more independence.

Big Ideas for Small Tools

The students began by participating in the IFOPA’s 2019 Family Gathering to talk with attendees and discover what tools could be helpful. The conversations resulted in four interesting designs that show promise for possible use in the FOP community.

“Aaron Herl’s device for self-feeding soft foods is quite innovative in that he discovered he could pump pureed food using air pressure. Grace Choi’s wheelchair device holder is also clever and needed by anyone confined to a wheelchair with limited upper body mobility,” Schneider said.

“Nik Pathak’s modular reaching device has a number of unique features such as his proposal to use a gecko-inspired adhesive pad to grab objects. And Lauren Huggler’s showering assist system brings much needed independence to washing and bathing.”

These ideas took shape under the guidance of Schneider and Tod Corlett, director of industrial design programs at the university. Sarah McNabb and Michael Barrett, who are studying occupational therapy, were also involved.

Feedback from the FOP Community

The Family Gathering, along with video chats and home visits, played a crucial role in the designs. For Choi, who created a modular concept to customize what someone might attach to a wheelchair armrest, those interactions provided vital information.

“Meeting individuals and getting to know their personal experiences helped me connect with the intimate details in their lives that would not have been possible from just reading or researching,” said Choi. “For example, Kathy Ford’s input on the modular armrest changed the way the cup holder was mounted, and she validated the usefulness of the spring clip which I could only speculate on.”

Monica Anderson hosted a home visit and is thrilled to be a part of an initiative that will hopefully benefit the entire FOP community.

“The fact that someone came to my house to learn about FOP and my specific needs and then designed something from our conversations was a dream come true…I prayed for someone to actually do this not only for me, but for people with FOP. We want to be seen as ‘normal’ and this project is just the beginning of what we consider normal,” Anderson said.

Ian Cali agrees. He watched the students’ final presentations and offered feedback as an adult with FOP. Cali is excited by the thoughtfulness and energy of the students as well as the professors’ knowledge and ability to encourage perseverance in trying to address different problems.

“We collectively realized that the design process was far from linear and that any viable solution to the problems in discussion would take a series of efforts,” said Cali. “Overall, it was an awesome effort on all fronts, and I feel fortunate to have had the opportunity to be a part of it and meet everybody involved.”

Looking to the Future

Schneider says this collaboration gets to the heart of his program. It has given students the chance to learn about universal and adaptive design, but also gain understanding and empathy. He counts it a success that his students are motivated to create practical products that will truly benefit the people who use them. The students are inspired by the courage of the FOP community and want to see designs more fully come to life.

Herl plans to turn his feeding system into his thesis project for a master’s degree and hopes to continue working in adaptive equipment manufacturing. Huggler, who designed a showerhead that could help with scrubbing the scalp and lathering shampoo, also dreams of seeing these ideas make a positive difference.

“The WILL Project has been the most rewarding and challenging collaboration I have been a part of thus far,” Huggler said. “I look forward to continuing my research in product development of assistive devices in order to provide accessible and affordable independence to those who need it most through the power of innovative design.”

Special Thanks and Additional Resources for Independent Living

While these products are only prototypes and aren't commercially available for purchase, the IFOPA and Ability Toolbox program are grateful for the creative efforts of the WILL Project in 2019-2020 and are excited to see the direction it takes in the upcoming school year. Interested in learning more about adaptive tools or need help modifying one to meet your needs? Learn more about the Ability Toolbox program here or contact the Family Services Coordinator at karen.kirchhoff@ifopa.org for support.

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