Being a caregiver for someone living with Amyotrophic Lateral Sclerosis (ALS) is tough. It’s a responsibility someone doesn’t always have the option to choose, especially when a family member or loved one is diagnosed with the disease. For many, it can be hard to know where to turn for help.
Joana Rosenberg has experienced this firsthand – her mother passed away from ALS in 2014. In the years following her diagnosis, Joanna served as a caregiver along with others in her family. Like so many other families dealing with this situation, they faced many difficulties assisting her mother with the tasks of daily life – but Joana saw an opportunity to make the process slightly easier.
“When my mother’s speech declined, we received an iPad with some apps on it for helping out with communication,” she recalls. “And at the time I didn't feel like there was really anything user friendly out there. I though just that I'd like to create something, as a mission, that was more interactive and easier to use for both caregivers and patients for basic communication, and just dealing with the challenges of ALS”
Joanna was in unique position to do something about this – her background was in tech marketing, and at the time she worked at cybersecurity company. At a hackathon at her company in 2015, she and coworkers developed a rudimentary communication app designed for ALS caregivers. The idea continued to gestate in Joanna’s mind over the next few years.
In 2017, she joined a 12-week, intensive tech accelerator program to see if her app idea could be turned into an actual business. She refined the concept through pitching sessions and other assignments, and then spent the next two years working with a friend and coworker building the app – all while continuing in her day job. She interviewed ALS caregivers, physical therapists, and speech therapists to make sure the app would as inclusive and useful as possible.
The result of all this work was SimpliHere, an app that debuted in Apple app store in early 2019. People living with ALS can utilize the app on an iPhone or iPad to communicate with their caregivers easily, sharing basic needs and wants like being thirsty, needing the bathroom, or wanting to turn on the TV. Users can build a “care circle,” so their messages can be sent to family members as well as nurses, physical therapists, doctors, and other caregivers. There are also features that allow people who are losing their ability to speak to contribute to a “voice bank”, recording certain phrases to use later with certain speech-generating services. Users will find resources like help finding adaptive equipment, curated ALS news, and a guide to online support communities for both people living with the disease and their caregivers.
One of Joanna’s big goals in designing SimpliHere was providing a useful tool that would be accessible to people with ALS and their caregivers even if they’re older and less familiar with tech products – an issue she faced when caring for her mother.
“I was trying to build something that you didn't need to be tech savvy for,” she says. “There was there was nothing available that had basic commands like ‘I'm hungry’ or ‘I'm thirsty.’ There were some apps that allowed you to write something with your finger on to the app. But my mother wasn't able do that. So, I wanted something that would work with just one touch, with just the basic needs, and that’s all.”
For years, this app was a side project for Joanna, but in 2020 she left her job in cybersecurity to focus on SimpliHere full time. That same year she also introduced a voice assistant companion app, similar to Amazon’s Alexa, called “Louise,” that allows caregivers access information from the app using voice commands.
Currently, Joanna is focused on increasing the app’s audience and continuing to improve its usefulness as tool for people dealing with ALS. Future projects include expanding the number of communities that the app links too, including Facebook groups, forums, and organizations that provide help, as well as connecting with researcher institutions to help gather data and even help users find clinical trials.
“A lot of communities exist out there, whether it's on Facebook or on forums for ALS patients,” she says. “I'd like to try to bring them together so that people can find them more easily. And then we're looking for any we can get users and family members to participate more in research initiatives by contributing their own information, participating in studies and programs, and giving data to research trials and programs.”
For more information about SimpliHere, you can visit their website, or find them on the Apple App Store.