As Kinza Kasher watched her mother deal with relapse after relapse in her struggle with multiple sclerosis (MS), she saw a steady decline in her mom’s spontaneity and articulateness. The breakdown in their communication further complicated an already stressful situation within her family. “My mother just wasn’t always aware of what was going on around her, and I noticed she wasn’t vocalizing how she felt,” Kasher said.
Unfortunately, such disconnects in communications are all too common in families affected by MS. Speech difficulties can be alienating for those dealing with the disease and frustrating for their care partners.
As a result of her experience, Kasher made it her mission to improve this communication. She started her own company and developed a device and app combination called Duet. Her innovation recently won the $25,000 grand prize of the Lyfebulb-Celgene 2019 “Addressing Unmet Needs in MS: An Innovation Challenge.”
In this Q&A, Kasher explains the inspiration behind her award-winning innovation and discusses how she believes Duet can help improve the lives of people with MS and their care partners.
What type of communication issues do people with MS experience?
“As my mom’s MS progressed, my extended family members didn’t have the patience to sit with her to understand all the feelings that she was trying to cope with. It was hard for my two sisters and me to watch. We felt like we were missing out on the core of our mother-daughter relationship. We navigated the lapses through some self-taught methods of communication, but it took us years and a significant effort to get to that point.
The experience with my mom encouraged me to do some of my own research by speaking with several people with MS and their families. It became clear that the communication issues were universal. A lot of families had difficulty gauging how their loved one was feeling, and many people with MS found it difficult to express themselves, so their relationships deteriorated. One patient I spoke with said that she reserves all her complaints so that when she needs her family or friends, she can talk to them without being perceived as overly negative. This story troubled me because I know how much care and attention someone with MS needs.”
How does Duet help address those communication challenges in families affected by MS?
“Duet was created from my research and my personal experience. There are many apps aimed at helping patients with MS express themselves, but many of them ask patients to write lengthy paragraphs to maintain a private journal. I wanted to simplify the mode of communication between the patient and their family.
[/caption]So I came up with a device resembling an eight-sided die that patients can program with messages and change those messages when they want. Once programmed, the patient can then select their message by turning it up on the device. That message is then sent to family members via a smartphone app.
The app keeps the family informed of how their loved one is doing, provides caregivers with tips to help engage their loved one and collects information on how a patient with MS is doing over time. That data could provide valuable insight into a patient’s disease progression and management.”
Why did you enter the Lyfebulb-Celgene MS Innovation Challenge?
“A few months back, I hit a rough point with Duet and my company, Leoplus USA. I had visualized several variations of the device, but I could not settle on a shape. My background is in product design, so the look and feel of the device was critical to me. At the same time, my mom was also going through a rough patch with her disease, which didn’t make things easier.
So I took some time to interview more patients and was searching the Internet for anything that could be useful. I stumbled upon the Lyfebulb-Celgene Innovation Challenge the day before the contest closed. The website called for innovations that addressed an unmet need in MS, and I was convinced that Duet fit that description. So I got my entry in just before the deadline.
I was blown away when I was selected as a finalist and got a chance to present Duet at Celgene. I saw so many different unmet needs being addressed by the finalists. I feel very blessed that I got involved in the challenge.”
Relationships with loved ones are integral to helping people with MS and can impact their emotional wellbeing.
What are your next steps in the development of Duet?
“With the $25,000 grant from the Lyfebulb-Celgene Innovation Challenge, I am going to invest in engineers who can take Duet to the next level. I’m setting up meetings with colleagues in the industry to see how they can help me. If I can test it in a bigger MS community, that should lead to new opportunities to help more patients and caregivers.
Relationships with loved ones are integral to helping people with MS and can impact their emotional wellbeing. This is an aspect of the disease that is often overlooked, and the community is desperately seeking solutions. I hope we can continue to see more funding go toward this unmet need.
The management of emotional needs cannot be put entirely on the patient—nor can it all be placed on the care partners. Duet is designed to be a mediator to take that pressure off both patients and the ones close to them—and help them work together better.”
To learn more about the MS Innovation Challenge, read “Why We Need More Innovation for Multiple Sclerosis.”