Will Project

Will Project

Designing a Better Life for People with FOP.

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.

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

What is FOP ?

Fibrodysplasia ossificans progressiva (FOP) is a disorder in which skeletal muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone (ossified). This condition leads to bone formation outside the skeleton (extra-skeletal or heterotopic bone) that restricts movement.

This process generally becomes noticeable in early childhood, starting with the neck and shoulders and moving down the body and into the limbs. People with FOP are born with abnormal big toes (hallux valgus) which can be helpful in making the diagnosis. This condition occurs in about 1 in 1,600,000 newborns and about 800 people worldwide are known to have FOP.

Research

I begin my research by traveling and attending the IFOP meet, where I had the opportunity to meet talk with different FOP people and experts in the field. I also had an opportunity to visit Ian Cali's home and interview him along with my batch mates and two Occupational therapist students who helped us by guiding us to conduct interviews with patients. Ian introduced his experience with FOP and how he carried out his daily task and all the hacks that he and his mother utilized to ease the task.

using hangers

as handle

Here Ian demonstrates to me all his different tools used by him in order to carry out daily routine tasks, which helped me a lot in selecting my project. After knowing all the difficulties faced by him and analyzing the need of people with FOP, I decided to go in the direction of designing a modular reaching device with multiple tool attachments and flexibility in handling.

Display of tools used by Ian in a day-to-day routine

Key Takeaways

Grabbing/picking up things at different height levels.
Lesser hand, arms, and shoulder mobility restrict reaching out to different body parts.
Tool rotation limitations.
Self-grooming issues.
Different tools for different activities.
Varying length requirements.
Lightweight tools.
Requirements for carrying out routine tasks independently.

Identifying User-Centric Issues

User requires different handles of varying lengths and angles for individual attachments used to carry out daily activities.
Conventional grabbers require to hold on to the trigger for a longer time to grab items. This utilizes a lot of arms and gripping strength and can also cause fatal injuries over long use; also, it is challenging to grip in case of the user who has arthritis in hand.
It is often found difficult to lift things and operate the handle using only one hand, which often leads to dropping off the items to grab or the handle/grabber by itself.
Carrying out the set of different tools every time the user needs to travel has also been troublesome.

Product Ideation

A single reaching device that can grab things with minimum gripping power.
Multiple tools can be attached and utilized by the same modular handle.
Providing an extra support arm on the device so the user can bring in both hands to hold the device which minimizes the lifting effort as well as dropping off the device.
Designing tool mounts to place and grab different attachments which can be placed on the flat surface as well as it can be fixed on the wall.
Providing adjustability & flexibility in length and angle so the user can use the device in the required position to perform the task.

a. Converting grabber tool end into s-hook tool that helps in removing and wearing clothes etc.

b. show-horn at the other side to remove shoes and other things.

Specifying target areas and deciding angles required to perform a particular task as shown in the figure.

Gecko Tape Gripper

A material inspired by the unique physics of gecko fingertips could allow robotic hands to grip nearly any type of object without applying excessive pressure.

Picking up a filled plastic bottle with minimum effort

Prototyping and Validation

I utilized a 24" long grabber tool available on the market in order to make a mockup of my design concepts.
Attached a support arm to the handle hence improving the handling of the device.
The front end of the grabber was modified in a way that it can be utilized to attach and detach varying tools head like hair-comb, sponge, cloth for cleaning face, etc.
Strategically designing the hands-free connection of different tools utilizing the grabber arms moving action.
The tool mount utilizes a magnet for tool alignment hence keeping it easy for the user to mount the tool on and off.

a. Grabbing the tool from tool mount

b. Placing the tool back in tool mount

Tool Mount (mock-up)

System

Support-arm lock

Support arm

Grabber lock

Power grip

Tool mount

Gecko adhesive

tape

Fidlock tool attachment concept

Task Analysis (semi-prototyping)

For the task analysis, I decided to tie up my hands in a way that restricts my hand mobility from shoulders and biceps to understand the process.
I choose to perform the task of combing hair and cleaning the face using the grabber tool as a handle as shown in the video.

Final Design

Results and Learnings

Feedback from 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,”

-- quoted by Monica Anderson (FOP patient).

“We collectively realized that the design process was far from linear and that any viable solution to the problems in the 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.”

-- quoted by Ian Cali (FOP patient).

“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..”

-- quoted by Eric Schnider (MSID Professor at TJU).

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.
I developed the skill of interviewing people and framing questions being specific about the topic that helps to build a good research base.
From the feedback, I realized that not all the designs are meant to be universal design, but can also solve many problems by modifying certain aspects of the design and modularity.
Keep the User first than the Product.

WILL PROJECT