A new ALS app called Roon shares wisdom from experts and patients
The goal is to provide empathetic and compassionate medical information
When I reflect on my time as a caregiver to my late husband, Jeff, while we lived with his ALS, I remember how afraid I often felt. I was fearful of injuring him during a transfer. I dreaded making a mistake with his feeding tube. I worried about his quality of life and emotional well-being.
I’d made a handful of new friends in the ALS community who had walked this path with their own partners or parents, and they reached out regularly to check on us, offering welcome and needed advice and lending support to both Jeff and me. We also had excellent ALS doctors. At the time, their collective knowledge and counsel was a godsend.
After Jeff died in May 2020 and I slowly gathered my wits to reflect on the difficult journey we’d been on, I wondered what I would have done without knowing others in this fight. ALS can be a very isolating disease, and resources and information are lacking for many.
I was excited earlier this year when I learned about Roon, an app that gives people navigating ALS medically vetted answers to hard questions, via video. I reached out to Vikram Bhaskaran, Roon’s CEO and co-founder, to learn about why he started the company and how it helps our community. It was a moving conversation as we talked about his dad, who he lost to ALS, and Jeff. Excerpts of our conversation follow.
JT: You shared that the story of Roon is deeply personal to you. Please tell us more.
VB: My dad was diagnosed with ALS in 2013 and passed in 2018. He was in India, where at the time, there were no ALS clinics and we had limited access to specialists. Our journey was incredibly difficult. I never wanted people who navigated ALS after us to feel the same lack of resources, information, and support, and I felt a moral obligation to do something. Roon is built on that simple idea that everyone navigating a hard health condition should have instant access to empathetic, compassionate, and clear medical information.
How did you come up with the name Roon?
My dad’s name is Arun, so the name “Roon” is, in part, a nod to him. Also, “Roon” spelled backward is “Noor,” an Arabic word meaning “light in a time of darkness.”
That is a beautiful story. What is Roon, and how does it work?
Roon is a completely free website and app that offers patients and caregivers answers to thousands of questions that come up on the ALS journey.
More than 100 world-class ALS experts from top medical institutions and others in the community have generously recorded the video answers they’ve always wished patients could have access to outside of the clinic. Their answers appear in easy-to-navigate guides covering symptoms, diagnosis, treatments, clinical trials, science and research, and more.
Neurologist Jinsy Andrews, for example, answered the question, “Are some patients cured of ALS?” This is a very common question, but if you look it up online, you get an unreliable mix of fact and fiction. An expert who can deliver the truth and appropriately describe the nuances is critical. That’s what Andrews does in her 54-second video.
Brooke Eby, who is living with ALS, has created over 100 videos to address questions she wished she had answers to when she was newly diagnosed. She chose serious topics, but also topics that have to do with finding and maintaining joy and hope, which are critical to the overall experience of navigating ALS.
I remember when she chose to answer the question, “How do you dance in a wheelchair?” That question always reminds me of how we need to provide answers to every aspect of life with ALS, not just the traditional medical questions.
Andrews and Eby are powerful voices, and it’s moving that they are sharing their wisdom. With this information, how are people living with ALS using Roon?
People living with ALS and their families are finding advice for choosing clinical trials, preparing for disease progression, learning about the latest ALS science, becoming knowledgeable about financial and legal topics relevant to ALS, and much more.
Roon is also a place where caregivers and loved ones find information and support for their own role. We cover important topics like taking care of yourself while caring for someone else, how to be a good friend to someone living with ALS, and how to find additional resources.
How can readers learn more?
That is easy and free. Just visit roon.com to get started. We also have an iOS app you can download at the app store. We welcome you to the community.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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