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Inside the Patient Entrepreneur’s Mind: Sangeeta Agarawal RN, MS

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Sangeeta Agarawal RN, MS is the Founder & CEO of Helpsy Health. 

As a patient entrepreneur, can you describe your personal connection to cancer and how this experience drove you to innovate the space?

My specific cancer connection includes multiple close family members and my best friend while I was going through undergrad. A lot of the women in my family had cancer and due to the stigma, it was never shared. A lot of the women in my family were also beaten and did not receive proper support. They also didn’t know that survivorship comes with side effects and lingering issues so that suffering was never addressed. Similarly, my best friend also had lingering side effects and felt that she could never really fully live her life. Working as a cancer nurse, I saw really bad things happen in terms of families breaking up, couples cheating, just because they didn’t have the right support to understand the cancer journey.

My background is in engineering. I’ve been a computer scientist and engineer working in this field for many years at some of the top organizations like IBM and Motorola. After that, I started having a lot of personal health issues, in part from being a victim of a violent crime. I almost lost my life, becoming an acute patient overnight, followed by multiple chronic health problems. I became an e-patient to apply the same rigor of scientific research and analysis to my own plan and I strengthened my passion for connecting people and sharing the truth.

I started cloning my brain as a cancer nurse to make the support available to everyone, online.

For over a decade, I’ve now worked in healthcare. I am trained as an Ayurvedic doctor at a Masters level focusing on behaviour change, diet change and whole health living. I ran my own clinic for 8-10 years and alongside I pursued western medicine and became an oncology nurse. With Helpsy, I combined eastern, western, and tech to try and address underlying root causes of physical/emotional health in order to provide solutions at scale.

What makes Helpsy unique and how does it meet an unmet need of the cancer community?

We are doing lot of work when it comes to helping people with finding cancer cures, but the unmet need today of our cancer community involves outpatient and follow-up care. As more and more care is moving outpatient, we need to support people through these different health issues and help share the responsibility put on the patient and family. Those aspects of care are not sufficiently addressed when 90% of their care happens when they are at home. There are a lot of gaps in that aspect of care because they may not remember what to do or have emotional issues that are not supported. They may need to know how to take time from work, rehab, transportation, peer-to-peer connection, etc. and we need to support those needs because it affects their lives in a very detrimental way. 90% of cancer patients have short and long-term side effects, but most of them are not aware that they will have these issues. Additionally, almost 40% of cancer patients will go bankrupt in two years. We are able to provide these services at scale, at low cost to everyone. Not everyone has a special, full care team and we’ve made that possible by cloning the brain and knowledge from all the key experts in the industry from an oncologist to a nurse to a dietician and yoga teacher.

Helpsy is an artificial intelligence system that has the brain of so many different modalities and provides the knowledge and expertise to the person for the issue they are having. It is customized to honor culture, language, socioeconomic status and is truly a personalized solution. Additionally, it is a true combination of technology and human expertise. There is a place where technology can do things and add value to humans as well as where clinical experts need to provide knowledge and clinical support. Helpsy can help balance that tradeoff, which is very important in today’s world.

Are there any other unmet needs of the cancer community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

The one big unmet need is to support the caregiver, family, loved ones and clinical care team. If you look from a caregiver’s perspective, given that almost all of us have different health issues, almost everyone is a caregiver multiple times in their lives. If you become a cancer caregiver, there are a multitude of issues you face compounded with your own personal issues. The caregiver gets spread really thin because they need to become the breadwinner, do the logistical work, and take care of their own needs. There are not enough resources and support to provide for them. At Helpsy, we are trying to do more and more for them. Patient advocates are best suited as entrepreneurs because of the shared lived experience. We have been through that challenge or that problem. We know what the journey is like and we know the dark days versus the good days. We can build solutions that help people like us at a much closer level than what is theoretically the ‘best’ solution for somebody. It is important that a lot of patient entrepreneurs are also advocates, in order to tie together the collective wisdom and suffering of larger groups, instead of addressing those challenges with just their individual experience.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? Is there a particular healthcare innovation that inspires you?

A few role models from growing up still inspire me. Before I knew I would be a nurse, I was always drawn to Mother Theresa because she worked in India helping people. I come from a humble background growing up on the streets in India. I was always the black sheep in my family trying to do something big and bold that didn’t fit into the norms. I looked to Mother Theresa because she had the ability to initiate large-scale change but also help others and support people. Reading about her, I was also inspired by Florence Nightingale, who was in an even more difficult situation hundreds of years ago. Now, looking back, I guess I was meant to be a nurse. On the technology side, I’m inspired by Adele Lovelace because she gave birth to the field of computer algorithms, pioneering some of the early algorithms sold. Working in tech, there are not a lot of women so sometimes we feel out of place and are mistaken for HR instead of an engineer. Lastly, my life is a collection of gifts and resources that people have given me, because I didn’t grow up with them. They have inspired me to help other people because that little help could mean everything to that person.

Lastly, what do you do for fun to manage the stress of running a business as both a person connected to cancer and an entrepreneur? Do you have any similar advice on work-life disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

Absolutely. I think I learned from experience because, when I first started Helpsy, it was pure passion of wanting to change the world. In the process, I would burn myself out as well as everyone around me. I made some mistakes and learned being an entrepreneur is a marathon and not a sprint. You have to keep pushing through it. There is a lot to do each day but it is important to pace yourself and the people around you so you can continue to deliver. I learned to celebrate small wins and to recognize the community effort.

I’m a servant of the company and there is an entire community of people working in this together.

Keeping that in mind and bringing everybody into the fold is important. It is also important to pick where to focus your energy and being able to make that calculated risk about big decisions. At the end of the day, I close every night with a gratitude practice for everything that happens and wake up grateful for the day ahead of me. Lastly, meditation helps, exercise helps, and everyday taking the time to learn from my mistakes and how I handle stress.

Inside the Patient Entrepreneur’s Mind: Liz Sacco

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Liz Sacco is the President & Founder of Diabetic Dabs. 

As a patient entrepreneur, can you describe your personal connection to Type 1 Diabetes and how this experience drove you to innovate the space?

I am a member of the diabetes community through my son David who was diagnosed with T1D at the age of 9.  After his diagnosis, I noticed there was a missing component in his testing routine.  A simple, efficient, and safe way to remove the excess blood left on his finger after testing his sugar levels.  It was an unmet need that inspired me to develop a solution.

What makes Dabs unique and how does it meet an unmet need of the T1D community?

What makes Dabs unique is that it is the only product that I am aware of that is specifically designed for post-testing cleanup. Dabs® were developed with convenience and cleanliness in mind. The booklets come with an adhesive backing to attach to any testing kit so they are always there when needed. Simply tear off one sheet with each test and safely remove the excess blood. Throw away the small sheet with the testing strip and easily replace the booklet when the 50 sheets run out.

Are there any other unmet needs of the T1D community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

Patient entrepreneurs are ideal for creating products & solutions because they live it day in and day out. Whether they live with the disease or care for someone with diabetes, they see the challenges.  There are always going to be unmet needs as technologies change and advance. However, I like to focus on the innovations people have developed and continue to develop to make living with a chronic disease more manageable.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? Is there a particular healthcare innovation that inspires you?

I draw my inspiration from my son and all of those that live with a chronic disease, in my case diabetes.  Being a member of the diabetes community has allowed me to see the resolve and strength in these individuals.  The stories and innovation within the community draws inspiration.  A great example is your Entrepreneur Circle. Here is just one platform that demonstrates a group of individuals that are making a profound difference. I feel honored to be part of it!

Lastly, what do you do for fun to manage the stress of running a business as both a person connected to T1D and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

Personally, physical activity makes a big difference in my life. I love to run. It creates energy, helps me feel balanced and clears my mind (And the fresh air doesn’t hurt!). I find it to be both physically and mentally beneficial. It is important for everyone to find some type of outlet that brings them clarity and peace. Although this will vary for everyone it will be instrumental in finding balance. One piece of advice that I believe is universal is mindset. Having a positive outlook and being able to see the silver lining in life’s challenges will put you on the right track for success.

JT’s #RealT1DLyfe: Channeling the Difficulties of Chronic Disease into a Compassionate Career in Medicine

Living with Type 1 for the last 15 years has been simultaneously absolutely exhausting and a compelling/ continuous opportunity for personal growth and empathy-building with other patients of chronic diseases.

My grandmother came to live with my family when I was seven- in very poor health. Unfortunately, like many living in remote rural settings, she lacked access to routine healthcare, and her diabetes had already begun damaging her nerves, affecting her sight, and impairing her kidney function by the time she was diagnosed. My experience with diabetes became even more personal five years later when my own diagnosis was similarly delayed in rural East Texas.

After earning my BS/ MA in Biology and running track at Baylor University, I moved to California to attend Stanford Medical School, and am currently applying to attend residency in Ophthalmology.*Editor’s Note: JT has just been accepted to the program at Bascom Palmer Eye Institute, congratulations JT!  During medical school, I’ve been able to start a Bay Area running group and training sessions for young and newly diagnosed diabetics to learn to manage their sugars during exercise. I am also a Dexcom Warrior and Lyfebulb Ambassador, and currently conduct research demonstrating how internet search traffic can be used to locate pockets of patients in need of diabetes-related surgical procedures or healthcare, such as diabetic retinopathy screening programs.

We all know how difficult diabetes can make everyday life – as patients, family members, significant others, across the board. Having been a patient dealing with a chronic disease that affects you every minute of every day has definitely given me a unique perspective and empathy for patients that I wish more doctors could experience. It’s very difficult to see the underlying stress, fear, and frustration that accompany a chronic illness like diabetes. In that way, being diabetic has pushed me to become a better physician and I am so grateful that I get to talk with and encourage other diabetics in the hospital regardless of which service I’m working with.

Please don’t hesitate to reach out! Jonathan Tijerina jdt2015@stanford.edu @jonathan.david.tijerina

Inside the Patient Entrepreneur’s Mind: David Hojah

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

David Hojah is the Co-Founder & CEO of Loro. 

As a patient entrepreneur, can you describe your personal connection to Multiple Sclerosis and how this experience drove you to innovate the space?

I think my main connection to MS is through my friend and mentor, Jack, who is a scientist from Cornell and CalTech and now lives with the disease. These days, he cannot walk or talk. He is one of my main inspirations for building Loro as well as to help others with similar conditions. I remember discussing with him, how can I help you and how can I help other people? Since I come from a technical background, and he comes from the same, we can speak the same language in terms of translating MS needs into technical solutions. After we came up with the idea for Loro, and once we implemented eye-tracking movement (which I was so excited about in the lab), I came back to Jack with the device and he was so happy. The device enabled him to be more independent, which is my personal motivation: to be able to give others the freedom to do what they want. At that moment, Jack was about to cry and I really felt I was doing something great, not just because I’m close with him, but that I could do something bigger.

What makes Loro unique and how does it meet an unmet need of the MS community?

One of the challenges with MS is they face a lot of symptoms including inability to walk, talk and move their bodies. There is not a lot of technology available to help with these challenges. Loro is unique because by using eye-tracking, we can enable individuals to control and communicate with minimal input. We implement technology to serve the MS community so that they can do more themselves without relying on their caregiver all the time.

Are there any other unmet needs of the MS community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

Honestly we haven’t explored this much yet for Loro, but as an AI companion, the device will be able to better understand the patient and their behaviors in the future. I think this will be helpful for how patients manage their diseases and conditions on a daily basis. Tracking behavior and managing and tracking disease progression is equally as important to address. Loro will be able to collect data and help health professionals to advance the management of the disease to hopefully find a cure. Currently there is no 100% cure, so patient entrepreneurs have a better idea of what to prioritize and how to understand symptoms in relation to the progression of the disease in order to develop the best solutions.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? Is there a particular healthcare innovation that inspires you?

As a kid, I used to play a lot and create and invent new things. Being an innovator is in my DNA and I’ve always had a passion for creating. I’ve been inspired by Stephen Hawking both personally and professionally in how people can use technology even if they are severely handicapped by disease. A lot of companies are doing amazing things to empower people to live better and more freely. On my team, everyone has relatives or friends with conditions like ALS, MS and other severe conditions. We know their pain very well and want to help all of these people. How can we help these people to become actively engaged in society? The answers to this question is our collective goal. Reaching this goal will help to improve society overall by creating more active members of society like designers and engineers. Professionally, we can help empower people on disability to be able to work a job. Personally, we can ease the burden of the patient-caretaker relationship and have patients feel more engaged and like themselves. Our mission is to help people with physical challenges to feel connected to the world.

Lastly, what do you do for fun to manage the stress of running a business as both a person connected to a chronic disease like MS and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

As an entrepreneur, we love to work too much. We are all workaholics. Especially starting something new, you become so addicted and passionate that sometimes you forget to have a personal life. My advice is work to achieve something but stop to take breaks and have fun. For me, that is by practicing yoga and meditation. It has helped me to manage stress, minimize overthinking, and relax within the confines of my own mind and body. I also love art. I draw and paint a lot which has helped my creativity and ability to innovate. One time, I was drawing and found the solution a particular aspect of the business we were stuck on. Loro is constantly running in the back of my mind so when I do something creative, it can spark a positive change somewhere in the business.

My 10 Year Pancreas Transplant Anniversary: A Thank You Letter to the Family who Decided to Offer Their Daughter’s Pancreas

Jan 2, 2010 was the day of my pancreas transplant. This means I have been insulin independent again for exactly 10 years since my T1D diagnosis at age 16.
No words can fully describe how this gift changed my life for the better and how much the experience taught me about the reality of living with T1D. In fact, much of the foundation of Lyfebulb came from these insights: patients need patients and patients can be innovators. Two very important concepts that I only understood after my pancreas transplant.

I was diagnosed with Type 1 Diabetes in July of 1989, and the disease had never fully become a part of me. I hated it from the beginning, and never worked to embrace it. However, I did work hard to study the disease, both as a student of medicine and science as well as a businesswoman later on in my career. I wanted so desperately to get rid of it and I also refused to let it limit me. But it did. I realized how much I was truly burdened by this chronic disease once I was free from having to constantly think about my blood sugar and insulin dosing.

Diabetes took something from me that I never got back, even after regaining insulin independence through transplantation, which was my innocence and belief in happy endings. However, it taught me that fighting would forever be an essential part of my new reality and that being different was always my destiny.

Ten years ago on that morning in January, when I was on the table waiting to be put under and cut open, I had no memory of what life looked like without T1D. Almost 12 hours later, I woke up in great pain but, for the first time in quite a while, was already producing my own insulin that started to heal my failing body.

When I was discharged from the hospital, thus began my road to recovery. I had already been through one transplant nine months prior (a kidney from my father), so I was put on the same drugs, and was in better shape than I was before my first transplant. Only 10 days before my pancreas transplant, I had passed out and hit my forehead on the dishwasher corner, which led to a broken nose, cracked open forehead, and the loss of a couple of teeth. This accident was due to my T1D, so the transplant was extremely urgent. Although my face was still bruised from the accident, I was ready to fight for my new life during this period of recovery and each day, I got a little better.

The first few days after the surgery, I was weak, but I made a point out of walking a little each day and making careful food choices to gain strength. I had learned from my kidney transplant that there were certain foods that were better with the immune suppressants. These particular foods helped my stomach to handle the heavy drugs so I had a lot of toast, bananas and soup. I needed gentle and mild sustenance so I avoided spice and anything raw or fibrous. Interestingly, my diet has not changed much since my time with T1D. I still cannot eat foods like pizza, pancakes, pasta or rice. Although I’ve slowly added sweet potatoes and some bread to my diet, the psychology of living a low-carb life does not pass easily!

After a week, I could leave the hospital and after two weeks, I was cleared to fly back home to New York from Minnesota where I had my surgery. I remember it being such a happy trip back, with a newly felt freedom where I had no need for insulin or glucose testing. I felt like my life was starting again!

Only one week later back in New York, I started to feel tired and very weak. Something was clearly not right, and I went to the hospital late at night after speaking to my physician. Sadly, I had an infection and was readmitted to the hospital. I was now at Columbia Presbyterian, since that is where my local transplant care is based. It took another week before they isolated the cause for my infection. It was an abscess close to the pancreas, which needed to be drained and cleaned. To do so, I had a tube inserted into my abdomen and a bag hanging from it, which collected the nasty bacterial fluid 24/7. This went on for an entire month and it came with a period of intense pain. Every time I spoke, moved or coughed, it hurt. Laughing was impossible! After the tube was removed, marking the end to this difficult time, I was on the mend and my journey toward health was back on track.

Today, 10 years after that incredible day, I think back to the family whose young daughter died and the decision they made to donate her organs, which changed my life (and most likely many others’). I cannot imagine how they must have felt that day, but since I now have a little daughter of my own, I understand the emotions that come from seeing your child in pain.

To this family: I thank you from the bottom of my heart. I promise you to take very good care of your daughter’s pancreas, to do as much GOOD with my life as possible and to never, ever take anything for granted. I learned too early that life is a constant fight, and I know too intimately the fear that comes when you are close to losing it. If the kidney transplant saved my life, the pancreas from your daughter made it worth living again.

Somewhat symbolically, today is also the day for Lyfebulb, the company I co-founded five years ago, to enter into the transplant space. We are already in six other disease areas; Diabetes, Cancer, MS, IBD, Mental illness and Migraine. We will be building a community online and in-person for people living with transplants and their care partners. We will be searching for the best new, innovative solutions to improve quality of life by listening to people who have been through the process of a transplant. I am proud to make this announcement since it is a population that, so far, has not had a real home and where innovation is far from fully exhausted.

Happy New Year AND New Decade!

Tools to Thrive: Running for T1D Management and Entrepreneurship

Many of us, including myself, face the difficulty of keeping blood sugar levels elevated during sessions of intense activities like running. Yet, if practiced correctly, running can be an awesome therapy for the physical and mental health of those in the #T1D community.

Insulin keeps me alive, but it isn’t the only therapy I use to manage my diabetes. I combine my prescribed insulin regimens with running in order to optimize my blood sugar. By committing time in my weekly schedule to running, I see drastic improvements in my blood sugar levels and I require fewer boluses of insulin, simply because I have fewer instances of hyperglycemia.

Let’s talk specifics: on a day that I want to run, I will be sure to have a pre-run snack like a banana to ensure that I don’t go low. Also, I always share my route with my girlfriend, so she knows where I am while I run around. Lastly, I find an awesome playlist that has my favorite tunes, specifically songs by Chance the Rapper. After making the appropriate preparations, I hit the road and begin feeling the benefits physically and mentally. Having the opportunity to exercise clears my head, reduces my stress, increases my cardiovascular health, and regulates my blood sugar. All of these benefits are super important to take advantage of as a patient entrepreneur managing both a chronic disease and a business.

You don’t need to hit the ground running, though (no pun intended)! Walking and jogging are also great starts, just as long as you get moving! These types of exercises can drop blood sugar levels fast, so supplementing your running with healthy snacks and meals is crucial. Be sure to check out some articles (below) if you’re interested in running with #T1D. Remember, don’t let type 1 stop the run!

Check out John’s recommended resources on running and T1D, with an addition from Lyfebulb Ambassador Christel Oerum of Diabetes Strong:

1) https://beyondtype1.org/a-runners-guide-to-t1d/

2) https://www.runnersworld.com/nutrition-weight-loss/a20834290/how-to-fuel-for-a-long-run-with-type-1-diabetes/

3) https://diabetesstrong.com/started-running-type-1-diabetes/

 

 

Inside the Patient Entrepreneur’s Mind: Ryan Stoll, PhD

Ryan Stoll Inside the Patient Entrepreneur's Mind

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Ryan Stoll is the Founder of COMPASS for Courage. 

As a patient entrepreneur, can you describe your personal connection to anxiety/depression and how this experience drove you to innovate the space?

I think there are two sides to this connection and the first is definitely the personal side. As a child and teen, I struggled pretty significantly with anxiety that was mostly social anxiety, self-doubt, and chronic worry about whether what I was doing was good enough. I felt the weight of overall anxiety and was suffering in silence, not necessarily realizing that what I was going through at the time was clinically dubbed as ‘anxiety’ AND something could’ve been done about it. That carried on pretty significantly throughout college. It took me away from social interactions because I was just too anxious to be around others (not that I didn’t want to connect). I took a job working nights at UPS and took all of my classes online. I stuck with my core group of friends that I had and pulled myself out of other situations to placate my anxiety. As that progressed, it was really when I shifted my career from art to psychology and got involved with the Courage lab (which I am still a part of today) that I started to get exposed to research and how we can address anxiety. I saw not only how I could help myself but also how I could help other kids who are in the position I was in as a child. These findings led me to attend grad school and specialize in focusing my effort on understanding anxiety in children and teens. Specifically, not so much as to how anxiety starts and why it sticks around but rather, how do we prevent it from happening in the first place. It is important to remember that anxiety is also a normal emotion. You can’t get rid of anxiety like you can’t get rid of your happiness. It’s all part of an experience that you can effectually manage and prevent from getting out of control. That being said, COMPASS for Courage came out of my own personal experience, my time as a researcher, and what was happening in my lab.

What makes COMPASS unique and how does it meet an unmet need of the anxiety community?

Obviously, beyond the prevention side of things and focusing on children and adolescents, what makes COMPASS unique is it is a true evidence-based intervention. It evolved from scientific grants years ago to what we have today, which is essentially taking 30 years of science, streamlining it, gamifying it and offering it to today’s youth. When we look at what is available on the market for anxiety, most of it is treatment-focused, teen/young adult-focused, or expensive, time consuming and challenging to use. Accessibility and ability to purchase is also an issue. With COMPASS, I’ve been able to remove a lot of these barriers to create something that is fun and leads to a better life for children.

We train school mental health providers and COMPASS is offered through the school beyond the classroom. Because this is prevention, we are preventing anxiety disorders at the first sign of suffering. We have to determine how high an adolescent’s anxiety is presently and if it is at a level that if we don’t do anything today it will become a disorder. In other words, they are on the trajectory towards an anxiety disorder later. We are in the business of courage building instead of anxiety reducing that we classify as strength-based, instead of weakness-based, intervention.

Are there any other unmet needs of the anxiety community that you think should take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

I think right now the biggest unmet need is human capital to actually support people and help them advance to improve their anxiety or other mental health problems. There is such a lack of trained mental health professionals in comparison to the number of people who need support. It isn’t just increasing the products or solutions that entrepreneurs can provide in the space that is needed, but also enhancing the number of licensed professionals. If we don’t have people to deliver these products and services, we can’t have the impact in reducing the consequences and burden of anxiety and mental health as a whole. Although at COMPASS we are already involved with individuals that are licensed mental health professionals, we are expanding it to individuals who can provide support without going to school for 8 years. We are doing this by transferring what we’ve learned in the world of science and research to individuals already providing support like parents, teachers, etc.

In terms of how patient entrepreneurs are well-suited, being that we have typically struggled with the target issue, we have a very unique perspective in terms of what is needed and where the gaps in care are just from our own experience. We have something you wouldn’t necessarily see or go through if you just want to innovate from the outside without going through it yourself. Having a deep understanding as an entrepreneur as someone who struggles with it and studies it professionally, we are well positioned to leverage our personal story to affect change beyond our personal communities.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry?

It can be tough when you are trying to pitch someone prevention when the place you see ROI comes further down the line through the outcomes. My research team, my graduate mentors and advisors push me because they believe in what I’m doing. I’m able to tap into that belief in me to push forward in what I’m doing when investors say no. Additionally, my wife is absolutely an inspiration and believes sometimes even more deeply than me in what I’m doing. I also draw inspiration just internally and reflect on my own experiences. Really, being in a position of having my PhD and extensive experience in the research world as well as in entrepreneurship I’m in a position where I can really affect change. Specifically, what I experienced as a child with anxiety doesn’t have to happen to the kids of tomorrow. This sentiment helps me when I’m frustrated and discouraged with the process of being an entrepreneur by focusing in on the big picture. As much as COMPASS is part of that vision, it’s just one example and the bigger picture of increasing access to mental health care and whatever it takes to do that is what I tend to draw from and push forward with.

Lastly, what do you do for fun to manage the stress of running a business as both a person with a personal connection to anxiety/depression and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

What do I do for fun? That’s a great question. It’s kind of interesting because as an entrepreneur when you’re focused on a goal bigger than yourself it tends to overwhelm your life. I definitely listen to a lot of music and keep it going most of the time while I’m working to keep the energy up. What I really do for fun to unwind is art. Well before I was a doctor, researcher and entrepreneur, I was a designer and photographer. That was my first passion in life and my major in college was art before switching to psychology. I tend to do that more now to manage stress than I had done in the past. Music, art, and hanging out with my cats and wife all definitely reduce some of the stress and turns down the hype. As an entrepreneur, nonstop worry and thinking also requires a space to turn my brain off and not react to anything that’s going on for a little while. I’ve started meditation recently for this purpose. It is important to keep in mind that this work as an entrepreneur in the healthcare industry, furthermore mental health which is more challenging, is really hard. It is okay to struggle and feel like you’re not producing enough. It is okay because this is really hard work and it’s challenging but so fulfilling. It is keeping that in mind and not letting the anxiety and self-doubt that comes with running a business prevent you from actually doing it.

Ryan Stoll Artwork

Optimizing Diet and Exercise as Tools for Managing T1D: Thoughts from an Entrepreneurial Certified Diabetes Educator

Colette finished her Master’s degree in Clinical Nutrition to become a Registered Dietician and a Certified Diabetes Educator. She is also a board-certified Sports Dietician, inspired by her former career in professional bodybuilding.

I have been living with Type 1 diabetes since 1984, signifying 35 years with the disease. I have watched some of my dreams come true including the Dexcom G6, a better basal insulin (Tresiba) and a noninvasive way to take insulin, Afrezza.  I understand the physiologic benefit to being on an insulin pump, especially those that DIY close loop their pumps and have basal modulation to help keep blood sugars in range, even if you don’t quite get the carb counting correct.

My issue with wearing all these devices comes with being a professional athlete.  Although I don’t compete anymore, I still try to live my life around a bodybuilding lifestyle, which means going to the gym five to six times per week.  I never liked being attached to a pump and having to find that perfect spot to put your infusion site.  I wear a weight belt when I train, which rules out my entire midsection, leaving only my right and left glute and outer thighs.  That didn’t work too well for me and I developed severe lipohypertrophy. Now, Afrezza and Tresiba offer me more freedom with much less worry around low blood sugar due to its fast in / fast out absorption.

While waiting for advances in T1D management, I have found that the best advice is to minimize the amount of insulin you need to inject before each meal and maximize your insulin sensitivity so that you don’t require that much basal insulin.  It is also crucial to keep in mind that the more carbs you eat, the more basal insulin you will need.  Insulin is NOT predictable, especially the injected, rapid-acting insulins.  In order to perfectly time them, you really need to inject 20-30 minutes before you eat in order to match up the peak of the food with the peak of the insulin.  To manage this difficulty more effectively, try to have your blood sugar < 100 mg/dl before eating.  That way, you have less insulin resistance.  It is also important to differentiate between the two sources of glucose when a person with diabetes eats – liver glucose and food glucose.  The best approach is NOT a keto diet because it is too difficult to sustain long term and, quite frankly, who wants to eat all that fat!  A true keto diet is comprised of 70% fat. We need more antioxidants and micronutrients than what can fit in the remaining 30%.  My T1D management diet philosophy includes high protein, moderate healthy fats and high fiber carbs such as legumes, vegetables, bean pastas, low carb wraps, spaghetti squash/acorn squash/butternut squash, and artichokes. Keeping the fiber high offsets how quickly carbohydrates turn to sugar, thereby giving insulin time to work and suppress the liver from producing glucose. It also allows for more variety in one’s diet and the one thing that the ketogenic diet lacks: fiber.  I have been following this diet throughout my competition years and continue to do so now.  This is not a fad diet, but instead a way of life and approaching food choices.  Understanding the unpredictability of insulin, we can infer that the more we need to take it, the more unpredictable it becomes. Optimizing diet as a tool is simple: eat the foods that require less insulin to ensure greater predictability and better blood sugar control.

Exercise is also another key component to my success. Similar to making dietary changes, this also was not without struggle.  Given that I love to weight train, high volume, high intensity weight training sessions involving my legs and back would often raise my blood sugar > 100 mg/dl.  I would have to take insulin on an empty stomach before my workout in order to keep in normal range. Interestingly, it is typically the stroll in the park when your blood sugar drops because it is non-stressful and does not promote the secretion of adrenaline and cortisol.  Don’t be surprised if you need insulin to workout, as it was common practice for myself for quite some time.

My last suggestion is to not be afraid of the lows.  My patients would rather be low than high. Although all too often our doctors want us to stay high where there are less short-term consequences, I stand by this statement. If you are wearing a CGM and more aware of your trends and predictability, incidences doctors worry about like insulin shock and passing out should not be happening.  If you ate something and think you might have taken too much insulin, be prepared with 1-2 glucose tabs.  You often don’t need that much when taking smaller amounts of insulin at each meal, especially if also following a low carb lifestyle. Even if you took one extra unit, we aren’t talking about a severe low.  It is also always important to choose a straight glucose source rather than food. If you take a glucose tab, it won’t cause that same reaction as food, resulting in more predictable rebound sugar and less weight gain.

The reality is we can’t just stop taking our insulin, but we can help it work better and be more user-friendly. Minimalizing the amount of insulin you take is one step towards better management.

To summarize, Type 1 diabetes is an autoimmune disorder, meaning there is no cure at this point in time. However, through efficient application of dietary practices and the implementation of a fitness routine, you can create a maintainable lifestyle that will ultimately make your diabetes more manageable.

Inside the Patient Entrepreneur’s Mind: Chris Molaro

Chris Molaro Inside the Patient Entrepreneur's Mind

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Chris Molaro is the Co-Founder and CEO of NeuroFlow. 

As a patient entrepreneur, can you describe your personal connection to mental illness discussing diagnosis through current daily management and how this experience drove you to innovate the space?

Like everyone else in this country, I have been personally touched by mental health issues. Unfortunately, almost all of us have someone we care deeply about that has been through challenges related to depression, anxiety, PTSD or another issue of the like. In my experience, I led soldiers in the Army, where I watched many of them struggle with trauma-related issues, and it has been my mission ever since to make sure patients have improved access to care and can engage with evidence-based treatment.

What makes NeuroFlow unique and how does it meet an unmet need of the mental illness community? 

NeuroFlow bridges the treatment divide, helping non-behavioral health specialists better assess and design appropriate treatment plans, and then coordinate that care more efficiently.  We complement the care coordination and collaborative care aspect of the platform with an engaging patient app for remote monitoring and to allow for 24/7 access to evidence-based protocols and education modules.  This data is synthesized by AI algorithms and sent back to the care team for real time monitoring and risk stratification.

Are there any other unmet needs of the mental illness community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs? 

I believe it is all about making sure that the patients engage with these tools and feel like they can trust the system and that it will work for them.  It may seem obvious, but patients are very different. A military patient is different from a high school student and they’re both different from a mother of five. Acknowledging patient individuality, they all respond differently to different types of content, coping mechanisms, designs, etc.  Patient entrepreneurs can lead the way in advocating for the end-user of these tools making sure that the solution being designed and built will actually be useful to unique patient users and accomplish its goal.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? 

20 Veterans a day commit suicide. 67% of the 50 million people in this country that struggle with mental illness never receive treatment.  These are huge and important problems to solve.  It’s easy to draw motivation when you’re mission driven by these large public health issues.

Where do you see NeuroFlow headed in five years? 

October of last year (2018) we had 2,000 patients invited to the platform.  Today, we have over 20,000.  We have expanded across 18 states and our platform is used by over 750 providers.  We want to ensure that anyone that could benefit from access to mental health resources can get them and no longer feel ashamed for doing so.

Lastly, what do you do for fun to manage the stress of running a business as both a person with a personal connection to mental illness and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community? 

I love the outdoors, so I go for runs, hike, kayak – anything where I can enjoy the fresh air and get exercise.  The only advice I would offer fellow budding patient entrepreneurs is to take time off from work (obviously) but to also be deliberate with your time off work.  As entrepreneurs, your time is extremely valuable, so you shouldn’t waste a minute. If you are taking a few minutes to relax, make sure you actually get to relax during that time.

Merging Family with Applied Science: My Diabetes Story

Throughout my life, I’ve been surrounded by many family members who have fought or are currently fighting diabetes. I’m from Vietnam, where education on healthy lifestyles and an emphasis on preventive health is almost nonexistent. In my culture we consume white rice, French baguette as a main dish, and sugar cane Coke — which is as common as water. Partially because of this, along with genetics at play, my mother was diagnosed with Type 2 diabetes almost a decade ago. Three years later, her older brother (my uncle) endured kidney problems and passed away from diabetic complications. Meanwhile, my other aunt and uncle on my mother’s side are both prediabetic and at serious risk for developing the disease. 

The distance from my family — and their health —  is hard. One way I stay connected to them (aside from visits across oceans and conference calls) is through my company, Bonbouton, a preventive medicine startup that is currently focused on developing products for diabetic patients. This decision to focus first on diabetes was solidified when the disease made its way even closer to home: My wife developed Gestational diabetes in the U.S. when she was pregnant with both of our boys, now 7 and 2.5 years old.

Bonbouton is developing a smart insole that can detect foot ulcers in diabetic patients before they form, reducing the risk of amputation. (200 people a day lose a toe or a foot due to diabetic-related ulceration.) I developed and patented the insole’s sensing technology in school while pursuing a doctorate in chemical engineering. 

Throughout my life, in addition to family, I’ve always been motivated by applied science. I never excelled in scientific research but was always interested in how to apply science to various applications and figure out ways to inject the technology into products that help people. Watching my mother, aunts and uncles, and wife battle diabetes was a driving force for me: I wanted to figure out a way to tie the two together. 

Another life changing event occurred in 2015 was my dad passed away from stage 4 colorectal cancer, a disease the doctors caught too late. Enough was enough: I didn’t want to see anyone get diagnosed too late anymore. I wanted to commit to preventive health, early detection, and patient empowerment. I wanted to create sensing tools that help people better understand their health so they can take action and maintain wellbeing. 

In fact, that’s the exact vision of Bonbouton: to sense the invisible and enable every human to live a healthier life.

Although there are several causes for the different types of diabetes, being autoimmune, inflammation, lifestyle, and genetics —the symptoms and complications remain similar, and that is what we care most about.Whether Gestational, Type 1, or Type 2, they each render similar lifestyle issues: one when you’re wondering what’s going on inside your body. When there’s so much to maintain, so many boxes to check. Having developed the empathy from my family, I wanted to build my life and career around sensing and healing. The way forward for me is my work as an entrepreneur with Bonbouton.

Inside the Patient Entrepreneur’s Mind: Maria Zannes

Maria Zannes IPEM graphic

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Maria Zannes is the President and CEO of bioAffinity Technologies. She is also a finalist of the 2019 Lyfebulb-Helsinn Innovation Summit & Award in cancer.

As a patient entrepreneur, can you describe your personal connection to cancer and how this experience drove you to innovate the space?

When I gave my pitch at the Cancer Innovation Summit, I shared a very personal story about my father. He was a glider pilot in WWII during a time when everyone smoked, and lung cancer took his life in his 30s. Additionally, my mother suffered from breast cancer and my brother, Tom, had survived lymphoma but later succumbed to glioblastoma. Given my personal connection to cancer, when introduced to the tech that bioAffinity has now developed, I was particularly taken with the possibility and real breakthrough characteristics in finding cancer early. Because of my background as a businesswoman, we chose to look at lung cancer because it is the largest cancer killer and this technology will help combat the fact that it is mostly caught at a late stage. It also has a high false positive rate, thereby our test, which takes sputum, would be used in conjunction with screening to label the disease early.

What makes bioAffinity Technologies, Inc., namely your lung cancer early diagnostic, unique and how does it meet an unmet need of the cancer community?

We’re unique in the human sample that we use. We collect phlegm. Although sputum cytology (taking phlegm from the lung and looking at it under a microscope) has been collected for some time now, we take sputum and actually look at all 21 million cells in a sample as opposed to the 40-50 thousand that typically come on a slide. We’re unique in that we are using flow cytometry instead of blood in the diagnosis of lung cancer and sputum is 100s more times concentrated in cells than blood. We’re able to get an important profile of the lung with different cell types by taking this type of sample. We also have reimbursement codes and the cost of our test is less for the consumer/patient. Lastly, it is becoming a very highly accurate test that can be used at a very critical juncture in a patient’s path to determine if they have cancer or not. For context, it is recommended that heavy smokers participate in a screen using imaging that can find lung cancer early, but the screen has a high false positive to find a number of other conditions. Our test can be used to hone in on who actually has cancer warranting a biopsy. This helps to avoid putting patients through biopsy—saving unnecessary tests, surgeries, and the emotional effects on an already compromised population.

Are there any other unmet needs of the cancer community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

First, the test itself is applicable to, and we will be developing it for, other cancers using samples that can be collected noninvasively like colon and prostate. In lung cancer, we also see that this will become a form of screening because it is a simple test where people can collect their samples at home using a simple handheld device. I think innovation, creativity, applied experience, and collaboration equals innovation and breakthrough and that is what we are looking at within bioAffinity.

If you’re focused, innovative, experienced, and creative, I think any organization can achieve great things. Certainly, passion in any form can help when there is a need to push through obstacle. A personal passion does wonders—it can make quite a difference. The drawback is “founderitis”—you don’t want to have so much of a passion that it blinds you to problems or to difficulties. I think we do it well here.  If you’re pursuing science, then it should be at your core of what you do—that means there needs to be objectivity to all of your work by looking at results of an experiment or clinical trial. At the end, you need to recognize “this is going to be used by someone” so sometimes that means changing course or that what you hoped for doesn’t come about no matter how strong you feel. IF you have a personal connection, like I do going through cancer with many family members, the last thing you want to give is false hope. Avoiding false hope keeps us all very honest in my field. I think passion plays a big part, and whether it comes from a personal connection or your own world view of where you can do the most good, it is very, very important. You have to have some kind of a tug to get into this—cancer research is a very humbling profession because cancer is a very difficult and remarkable disease in how it changes you and your ability to survive.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry?

Obviously, from the beginning, I have been inspired by my mother, my father and my brother and their experiences with cancer. However, my inspiration comes from how they lived—they were not defined by a cancer diagnosis in any shape or form. In addition, I am definitely motivated by the science and the people with whom I work. We have a very passionate, dedicated team, made up of remarkably intelligent and skilled individuals. Every day is a learning experience. You always have to keep in mind that every decision you make will ultimately affect the patients. More than providing inspiration, patients impact the decisions I make as to whether we should do that test one more time or wait for an answer to a question before moving to the next step.

Lastly, what do you do for fun to manage the stress of running a business as both a person with a personal connection to cancer and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

Laugh a lot. Find reason to laugh. I have two sons who are absolute delights and they make me laugh all the time. It is also important to make those personal connections with people. There are so many different approaches to building a company, and many are personal. it isn’t so much about the number of hours you put in, but rather how you spend those hours. You need to figure out all that you need to know as well as what you don’t know. In the cancer/health-related field, you need to have a sense of humility and ask for help and collaboration. I’ve gained a sense of perspective in that I am working towards a goal of finding a truth as a result of my family’s experiences with cancer. That helps me manage the stress that comes with the job, because I am in the business of finding the truth instead of putting a round peg in a square hole.

Maria Laughing With Sons

#RealT1DLyfe Liz’s Story: Finding New Solutions while Caring for a Child with Type 1 Diabetes

Throughout my life diabetes had been an illness I knew little about and was fortunate enough not to have experienced myself or through loved ones. That all changed in 2011, when my oldest of four boys (David) was diagnosed with Type 1 diabetes at the age of 9. As a family we were overwhelmed, scared, and uneducated about the disease. As a mother, my first thought was, “What can I do to help my child?” I knew all the emotions I was feeling and could only try to imagine the thoughts that were running through my child’s young head. Immediately my stoic side came out, trying to calm this frightening situation. This was all new territory for us. The only absolute was to provide love, support, and willingness to learn everything I could about this new disease that just struck our family.

Although I do not live with the disease personally, anyone who has a loved one affected by this terrible burden knows that management is not solely the responsibility of the individual diagnosed– especially when it is a child. Inherently as a mother you worry. Add that to that the worry of a child living with a chronic disease, and suddenly the threshold is increased to a whole new level. It is with you 24 hours a day, 7 days a week, 365 days a year. Throughout the course of adjusting to our new lifestyle of insulin injections, carb counting, and blood glucose tests, I soon realized there was a missing component in the testing routine. A clean, simple solution to safely remove the excess blood left on the finger after testing sugar levels. Testing his blood anywhere from 6-10 times a day was the norm. Inevitably, David would wipe the blood either on his clothes or the inside of his case. After searching the marketplace, without success of finding a product for this unmet need, I took matters into my own hands. Being passionate about helping the diabetes community, I conceived, patented, and developed Diabetic Dabs®; booklets of absorbent sheets designed with an adhesive backing to attach to any testing kit.

My goal is to help families such as mine simplify managing diabetes and hopefully inspire others to act where shortfalls present themselves. We are all in this together; being a member of this community, our mission is to eradicate this horrible disease.

There is no stress-free way to handle the responsibilities, the highs, the lows, and emotions that come along with diabetes. However, there is a way to take control—and that is through mindset. I felt it was my responsibility as a parent to teach David that mindset determines your path in life. Mindset and perspective can turn a positive situation negative or a negative situation positive. Sometimes life throws curve balls at us—and it is in those moments that we decide how we will handle them. My goal is to empower those in the diabetes community to have a voice and make a difference!

Get real with T1D!

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