The WILL Project Continues to Innovate with FOP Community

Meet the next class of students who are working to improve life for people with FOP at the 2022 Family Gathering 

In 2019, educators and students from Thomas Jefferson University launched the WILL Project (We Improve Life and Living “WILL” with FOP). Led by assistant professor of Industrial Design, Eric Schneider, the group set out to explore ways in which design could improve life for people living with FOP.

The WILL team was introduced to the FOP community by Dr. Zvi Grunwald, and they attended the 2019 Family Gathering. There, students were able to learn from the community members themselves. They heard firsthand accounts of daily FOP challenges. Between video chats and in-home visits, students maintained ongoing conversations as they designed tools, including self-feeding devices and shower assist systems.

Today, students from the schools of industrial design and occupational therapy continue to work together. Building on past findings, they are creating more real-world solutions. The Project has evolved since it began and even serves as the capstone project for many students.

Meet the WILL Team at the 2022 Family Gathering

Just like students before them, the current WILL team relies heavily on collaboration with the FOP community to generate ideas and perfect designs. We are thrilled that the students will be joining us at this year’s Family Gathering in October. Attendees will learn about the latest project innovations. Patients can also share their own hopes for new tools to address specific struggles they experience.

FOP community member Sharon Kantanie worked with the WILL team in the past. She knows the importance of opportunities like this where students and patients can connect.

“FOP is such a unique disease, and the WILL Project is invaluable in a world where existing tools and gadgets don’t always meet our needs,” she said. “Working with the students was a wonderful experience. It was amazing to see what they were able to invent and adapt.” 

Without Patient Involvement, Designing ‘Would Just Be a Guessing Game’

As students continue to engage FOP community members on new designs, the bond between the WILL Project and the FOP community continues to grow and provide critical insights.

“People with FOP are the only experts in their routines, how they move and knowing what works and what doesn’t for them,” said industrial design student Jennifer Hegelein. “Being able to work with FOP experts is the reason this project is so successful.”

Hegelein and other students have come to realize that part of what makes FOP so difficult is how differently the disease progresses for each person. They knew this would require more creative solutions. Luckily, they found that many FOP community members already had ideas for innovative tools. Working together, the team was able to execute on those concepts.

“The project proved that it is essential to keep going back and forth with the users because they are the true innovators,” said industrial design student Maitri Doshi. “We are bringing their improvisations into reality, but they got the idea to the world.”

Recently, Occupational Therapy students Andrew Berger, Kyndra Adams and the WILL Project collaborators published a paper on their work through Applied Human Factors and Ergonomics (AHFE). It will be featured at Thomas Jefferson’s Celebration of Innovation gala this fall. Around the same time, the WILL Project is set to expand overseas.

The WILL Project Crosses Borders

FOP patients in Israel will soon be able to participate in the WILL Project. Shenkar College of Engineering, Design and Art faculty members Assaf Krebs and Yigal David, along with their students, will partner with Dr. Ruby Haviv and two of the individuals with FOP he treats.

The Israeli team created the course with help from Schneider and Thomas Jefferson University assistant professor of Occupational Therapy Kimberly Mollo. The two schools will offer a joint course to work together on specific FOP issues.

The ‘Perfect Platform’ For Collaboration

Regardless of where they call home, people living with FOP face many of the same challenges—as well as incredibly unique ones. Schneider believes programs like the WILL Project remain key to finding adequate mobility and accessibility solutions to serve all members of the community.

“This is a perfect platform for occupational therapy and industrial design collaboration,” he said. “It really pushes both disciplines to work together in creative ways.”

It has also been the perfect platform from which to build an invaluable library of user feedback and designs to pass on and inspire future innovation.

“The long-term relationship with the IFOPA has facilitated deep and lasting knowledge of the disease, patient population and understanding of possible avenues for design intervention,” said Schneider. “This relationship is quite unique and has allowed us to really leverage the work of multiple cohorts of students building on the work of others.”

Meet with WILL Students at Family Gathering

Be sure to join us at this year’s Family Gathering, October 8 & 9, to meet WILL Project students. It will be a great opportunity for community members to learn about the team’s latest innovations and discuss new ideas.

Register for the 2022 Family Gathering

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