New App Provides Resources To Caregivers of Neurodegenerative Patients on the Central Coast
A new app is getting the attention of local caregivers for patients of neurodegenerative diseases, which can help lead “from care to cure.”
The Peter Cohen Foundation introduced an app recently called EverythingALS.
“Named after Peter, my husband,” says Indu Navar, EverythingALS founder and app developer. “We have over 24 pharma companies who have partnered with us, about 15 clinics and institutions have partnered with us, and I work with about 7000 ALS families from 60 countries.”
It facilitates a combination of real-time research, partnerships, and AI-assisted pathfinding for caregivers of patients with qualifying disorders.
“We have different brands, which is EverythingALS, we have EverythingALZ now, focused on Alzheimer’s,” says Navar. “What I see is that people have a continuum. A lot of people who have had ALS also have dementia.”
Patients with conditions like dementia and ALS lose capacity for basic functions and require caregivers.
Those caregivers are sometimes family members without medical training.
“I got involved in this literally because in ’98, when I came back home to assist my aging parents,” says Deneice Tell, a retired psychiatric technician and IHSS caregiver. “So I did that until they passed away. And that was probably a 15 year journey with my parents.”
For new caregivers, it can be difficult to know where to start, let alone how to get everyone from the doctors to the pharmacists and everyone in between, all on the same page.
“People want to know, how do you get somewhere?” says Tell. “That's life, communication and information. You can't put a price tag on that.”
Bay area researcher and developer Indu Navar had to care for her husband who passed away in 2019 from ALS.
That experience led her to develop the app.
“We're kind of the transformers in between taking the data, converting into insights,” says Navar. “You can do a lot more, faster, because we're all in this flywheel.”
Navar says the app has the potential to expand to other conditions.
“What a wonderful tool,” says Tell. “Instead of me basically biting my fingernails, trying to ride around or figure it out myself, when it's already there. So we can make wise decisions.”
For more information, clicking this link leads to the EverythingALS home page.
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