Women In Wellness: Indu Navar and Lisa Deegan of EverythingALS On The Five Lifestyle Tweaks That Will Help Support People’s Journey Towards Better Wellbeing
An Interview With Candice Georgiadis
Indu: I would encourage everyone to become aware of the voids we have in our healthcare system and take action by volunteering, in clinical research studies and support citizen-based research.
As a part of my series about the women in wellness, I had the pleasure of interviewing Indu Navar and Lisa Deegan.
Indu Navar and Lisa Deegan both lost loved ones to ALS. After watching their husband and younger brother, respectively, suffer from the disease with no answers they launched a non-profit, EverythingALS, to develop a solution. EverythingALS is conducting research using AI technology to spot and track early signs of ALS.
Thank you so much for joining us in this interview series! Our readers would love to “get to know you” better. Can you share your “backstory” with us?
Indu: I was born and raised in Bangalore, India, where I also earned a degree in electrical engineering. Although my parents wanted me to stay in India and get married, I always had higher ambitions. So after getting my bachelor’s, I went to California and got a master’s in computer science.
I didn’t find out about ALS, or amyotrophic lateral sclerosis, until 2018, when my husband, Peter Cohen, an Amazon executive who helped found AWS, was diagnosed with the disease. He passed away a year later. In a yearlong search for a diagnosis for his debilitating symptoms, followed by a terrible year of his progressively rapid decline, I realized that we had wasted whatever possibilities for slowing down the disease that might have existed while we had wasted our time trying to get a diagnosis.
As a computer engineer and successful Silicon Valley entrepreneur, I was used to identifying a problem, proposing a solution, raising funds, recruiting and leading an expert team, and setting up a timetable to achieve our goals. I also learned that whenever I encountered an obstacle, there was always an innovative way to overcome it. In fact, innovating and breaking the traditional ways of finding a solution while openly sharing ideas with others has underscored the success of the Silicon Valley model.
That’s why, shortly after my husband’s death, I rallied together my contacts in the tech, VC, and ALS community to found a nonprofit, EverythingALS. Our goal is simply to find a digital biomarker for ALS that will not only identify the onset of the disease but also assess its progression in a way that is centered around the patient experience and shared with the research and medical community.
Lisa: I was born and raised in Silicon Valley, where my brothers and I all later worked in tech. In 2014, my younger brother was devastatingly diagnosed with ALS, and in 2018 he lost his battle to this debilitating disease. When he was diagnosed with ALS, we had no hope for his future; we knew his time on earth was limited as there are no effective treatments or a cure for ALS today. The journey was painful not only for my brother but also for our entire family and support system as he required 24×7 care. I provided my brother with a lot of support and got to experience first hand how devastating this disease is. In the end, he was extremely thin, could not speak, walk, talk or move any of his limbs and his breathing and swallowing were very compromised. He lost his will to live; everything was a struggle not being able to do a single thing on his own and the emotional stress took a big toll. I think he hung on for our family, but in the end, even that could not change his will to not want to live.
After he passed, I connected with Indu who had just lost her husband and together, we co-founded EverythingALS along with our team who have all been affected. I wanted to run the other way from ALS but in the end, I did not want to see others suffer the way our loved ones did, and together, we wanted to solve a big problem that exists today.
EverythingALS was born out of passion and wanting to leave the world a better place than when we arrived. We are an advocacy and patient-led organization, dedicated to advancing clinical innovation and digital technology to help people with ALS manage their disease and accelerate potential therapies. The goal of our digital biomarker research is to track progression, get an earlier diagnosis, and better understand the prognosis of this heterogeneous disease.
Can you share the most interesting story that happened to you since you started your career? What were the main lessons or takeaways from that story?
Indu: I like solving massive problems that require an engineering framework with a lot of data analysis. My first job at NASA involved analyzing black box flight data. Then I worked at Silicon Graphics, where again I analyzed data for building Internet solutions. When I went to Healtheon in 1996 — later WebMD — we first had to create data because there wasn’t any at the time, and then we developed processes for optimizing healthcare from that data.
In 2001, when I started Serus, which provides intelligent solutions for semiconductor companies, manufacturing was taking off; data was available but there was no way to make sense of it, because companies were working with different manufacturers, different standards, and in different languages. We built a uniform system for decision making. I’ve always been attracted to solving big-industry problems, which is why my training was ideal for starting EverythingALS.org, which is changing the paradigm for clinical research trials by setting up a new framework for accelerating the process.
Lisa: The best thing that has happened in my career was having the opportunity to be part of something that will better the outcomes of people affected by ALS, and those who will be diagnosed in the future. We are building a platform that is changing the paradigm of ALS, working towards progression tracking through digital monitoring of the different onsets of this disease. Neurodegenerative disease diagnoses are increasing; there is no cure for most of them; and this is a growing problem. It is motivating to be a part of creating a solution that will help to save lives and make a difference for others so they don’t suffer like we did. We also provide others what we did not have while going through our journey, a community to connect with for education, collaboration and research.
The main takeaway is that neurodegenerative disease diagnoses are increasing. We as citizins need to get involved in helping to get a better understanding of what causes these brain diseases and detecting them earlier so we can start treatments earlier and lengthen peoples’ lives. We need everyone to participate in our study, as most know someone who has been diagnosed with a neurodegenerative disease. I believe that leveraging technology to uncover patterns, progression, and subgroups that have not yet been discovered will lead to treatments and better patient outcomes.
This will take a village to solve, so we need people to participate in our research study. To sign up, visit everythingals.org/research. Your participation can help make a difference for someone affected now by ALS and someone in the future who will be diagnosed with a neurodegenerative disease.
Can you share a story about the biggest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
Indu: When I started Serus, my child had just been born and I was afraid to tell anyone because I felt I wouldn’t be taken seriously. I felt like I needed to keep my life private and show my professional life. I had to prove myself. I only told people during my series A round in 2005, when I brought my child to a meeting. I feel that today being a mother and a CEO is far more accepted than it was when I was the CEO of a startup.
Let’s jump to our main focus. When it comes to health and wellness, how is the work you are doing helping to make a bigger impact in the world?
Indu: I feel the healthcare system is very opaque until you get sick. It’s as if there is a screen, and once you get sick, there is a dark cave you enter. We need to create awareness of diseases, specially the 11,000 neurological diseases like Parkinson’s, Alzheimer’s, and ALS (amyotrophic lateral sclerosis) so that scientists and pharmaceutical companies can start working on treatments and cures. One in four people are going to have a neurological issue by 2013, so we need to become aware, get involved in citizen-based research, and take a preventative stand to make the world a healthier and better place.
Lisa: With neurodegenerative disease diagnosis growing, 1 in 300 will be affected by ALS. Healthcare costs for these diseases are increasing along with the need for care and especially care from home. There are no biomarkers or diagnostics for ALS, diagnosis takes 1–2 years, and most don’t qualify for clinical trials due to their progression.
Our current research is going to change that.
Our research consists of 850 participants, soon to reach 1,000, and can be done from the comfort of your own home on a computer, laptop or smartphone. We provide access and inclusion for all. You can participate if you are healthy or diagnosed with ALS/PLS, you must be 18+ in the US, and have the ability to speak.
Can you share your top five “lifestyle tweaks” that you believe will help support people’s journey towards better wellbeing? Please give an example or story for each.
Indu: I would encourage everyone to become aware of the voids we have in our healthcare system and take action by volunteering, in clinical research studies and support citizen-based research.
I volunteer my time to fix our healthcare system.
I also take care of myself physically so that I can function as productively as possible.
I feel that passion comes doing something you
love doing. Working hard, doing purposeful work, and finding the purpose within yourself can lead to a better life not only for yourself but for others as well.
Lisa:
- hours of Sleep: most important is getting quality sleep each night by setting a routine and developing good sleep habits, such as no computer or phone screens 2 hours before sleep). Lack of sleep leads to many health issues.
- Mindfulness: being present each day, as often as possible especially when around others (stay off cell phone when you can)
- Gratitude: People who show true gratitude are happier people.
- Drink water and eat real food like fruits and veggies. It is important to move your body!
- Pursue your passions and surround yourself by quality friends and family
Sustainability, veganism, mental health and environmental changes are big topics at the moment. Which one of these causes is dearest to you, and why?
Indu: Sustainability is core to what we are doing. Our resources are limited, and we want to make healthcare sustainable, reducing hurdles to getting access to healthcare treatment.
Lisa: Access and affordable healthcare, especially for people living with ALS. Our platform is open, we collaborate with all researchers and our research give easy access and inclusion to anyone who wants to participate.
Another important movement that I would love to start is accessible and affordable mental health care to help a growing problem in our country, especially around teenagers. There is such a prevelence of anxiety, stress, and depression amongst our teens, it is frightening. I know too many who have suffered from these conditions, and some who have ended their lives. It makes me sad, because being a teenager is supposed to be a fun time full of learning, growing and maturing. Now, it is difficult to be a teen, and of course COVID did not help matters, only made things worse. Perhaps living in Silicon Valley adds a lot of pressure to our teenagers, although this reflects my point of view since it is the only place I have lived as a teen and raised my children.
What are your “5 Things I Wish Someone Told Me Before I Started” and why?
Lisa: For me personally, mental health is nearest and dearest to me. As a mother raising teens, I see more depression, anxiety and suicide among our future generation than ever before. So many kids are on medication, drugs and taking their own lives. This is a crisis in our country and we can’t look away. This needs to be addressed — healthcare needs to be accessible, affordable and mental health should be a part of this equation. We need to nurture and take care of our future generation, they are going to need all the help they can get!
What is the best way our readers can follow you online?
Lisa:
Sign up for EverythingALS Research: everythingals.org/research
EverythingALS Website: everythingals.org
Podcast: Stories and Innovation in ALS
Follow us on Social Media:
Insta: @everythingALS8
Twitter: everything_ALS
Facebook Page: EverythingALS
Facebook private group: EverythingALS
LinkedIn:
EverythingALS
Email us: [email protected]
Thank you for these fantastic insights!
Women In Wellness: Indu Navar and Lisa Deegan of EverythingALS On The Five Lifestyle Tweaks That… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.