fbpx

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

Inside the Patient Entrepreneur’s Mind: Ira Spector, PhD

Ira Spector Blog

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. 

Ira Spector, PhD is CEO & Co-Founder of SFA Therapeutics. He is also a finalist of the 2019 Lyfebulb-Helsinn Innovation Summit & Award in cancer.

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

I had two parathyroid tumors removed in 2013 and I was very lucky that they were both caught early and localized. The only problem I had was a sequela of cancer treatment, because there is almost always other damage that occurs. For me, my body was overproducing calcium after cancer treatment so I have calcium deposits in all of my joints as well as my heart valve that required a lot of follow up cardiac care. In my case, I feel lucky that my tumors were caught early. Unfortunately, I have a lot of other personal connections to cancer and other illnesses that resulted differently than my case. My mother and father both had cancer, we lost my father-in-law to colon cancer and my brother-in-law to what we think was glioblastoma. I was also heavily influenced growing up with a seriously ill sibling in terms of guiding me to do what I do now. I’m fairly unique because I am in the drug development industry.  In terms of cancer, specifically, when I found the technology that was the basis for SFA, it was supposed to start as an anti-inflammatory platform. Almost  by happenstance, after looking at the pathways downregulated by this anti-inflammatory platform, I found them to also be oncogenes. When I discovered the downregulating effect of this anti-inflammatory platform on certain oncogenes, I learned that there were other cancers with an inflammatory component that we could go after with this therapy. 

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

Cancer patients live the rest of their lives looking over their shoulder waiting for the cancer to come back—we think our drugs are the metaphorical umbrella to prevent recurrence. Other than addressing environmental factors like smoking, cancer prevention doesn’t get a lot of attention on the Big Pharma or development side. What we’re saying is wait a second, there are millions of people who have already been treated and now they are just living in fear—what about them! We think we have an approach to reach this community of people. With the exception of certain type of breast cancer, there are very few cancers where other drugs are used to prevent relapse recurrence. At least in terms of CLL and ALL, the path to reduce recurrence comes from this drug we are developing at SFA. We think there is a whole generation of drugs that are very safe and non-chemotoxic to help prevent relapse.

Traditional treatment of cancer has been based on the theory that cancer cells grow more rapidly than normal cells. Agents like chemotherapy or radiation have been used to kill those cells, while also killing healthy cells in the process, to reduce the cancer burden. Our thesis differs in that we believe certain cancers have an inflammatory component and there is a way to control that inflammatory response in the cell. Our drugs are designed to prevent recurrence of tumors by reducing chronic inflammation.

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?

Cancer is all too often treated with the ‘let’s just get it out’ mentality and we need a more integrative approach involving the family and disease experience. There are others working on this too, and although we have to be focused with resources, we recognize that there clearly needs to be an integrated approach that improves cancer aftercare. Although we are focused on drug development at SFA, we as Patient Entrepreneurs recognize the general needs of the community are huge. There is a lot of stigma and psychology that could be addressed here. I have a tremendous sensitivity to the broader issues here and I recognize that is also not a very well met need societally. 

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

Patients. I’m an industry veteran involved in household name drugs. That being said, I get up every morning thinking about patients who haven’t been treated and patients who could’ve been treated by drugs that failed. The inspiration comes from the fact that we are not done and there is still a lot left to do. I know that has become my mantra now in the industry, but it has always been my driver. Getting out of the lab or business setting and going out into the field to talk to physicians, patients, and families—that’s why we are here. Almost everyone who gets into this have personal connections—both of my co-founders have personal connections. It’s just that simple. Pharma and biotech are rated the lowest of the low in public opinion polls, even though most of us who work in this industry are trying to change the world. Despite making a fair amount of progress, we are all vilified based on perceptions about things like costs and the opioid epidemic. We just soldier on regardless of the public opinion in the hopes of changing public understanding of how hard we work to help patients. 

Lastly, what do you do for fun to manage the stress of running a business as both a cancer survivor 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?

There are two activities that I engage in. In the summer, we move to the beach so I average 3-4 miles per day walking on the beach. I’m also an active swimmer. However, my other big passion is restoring antique cars. The goal isn’t to finish, but to just decouple by putting on the stereo (I’ve worked on a car for 5 years). On a bad day, if I can’t get anything done on a car because of the calcium deposits in my hands, I walk away and do something else like walk or swim. My advice to other budding patient entrepreneurs is that you need to have activities that totally decouple from what you’re doing and enable you to have a recreation that clears your mind. Do something completely different in order to unplug. You just need to have something, whether it’s music or sports, to decouple from the stress of the day.

Ira Spector Car Restoration

Inside the Patient Entrepreneur’s Mind: Jon Margalit

Jon Margalit

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. 

Jon Margalit is CEO & Founder of Complete Start. 

As a patient entrepreneur, can you describe your personal experience with IBD from diagnosis through your current daily management and how this experience drove you to innovate the space?

To make a long story short, I am a very social and outgoing person who enjoyed immensely being out with friends networking, in all types of social settings. I was also an avid gym goer and black belt martial artist. Once diagnosed with Crohn’s, I had to deal with all kinds of drugs and steroids to mitigate the ill effects of the disease and as a result transformed into a guy with acne all over who was afraid to leave the house at the risk of being too far from a comfortable bathroom.

With that being said, after trying different types of drugs, I realized really quickly that this wouldn’t change until I took matters into my own hands to find solutions. After some research, the one thing I found I really had control over was what I was consuming. I focused on what I could control and immediately thought to myself if I study this, and become an expert in food science, perhaps I might be able to make some drastic changes in how I’m feeling and looking. Inflammation causes the digestive tract to shrink so we [the IBD community] have difficulty digesting whole vegetables and roughage. I had the idea to freeze dry and grind them into a powder to consume micronutrient rich vegetables without digestive issues. I bought a freeze drier on amazon to test the idea.

What makes Complete Start unique and how does it meet an unmet need of the IBD community?

There are products on the market that are similar in nature, but we are the only ones completely organic and non-GMO. Our goal is to deliver the most complete and clean digestible nutrition for customers. As a result, the cost to produce has vastly increased. I quickly realized why our competitors didn’t produce the same quality of product because it narrowed the customer base. We are sticking to offering a premium product at price, staying true to our goal. 

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

 I think that the key to making a widespread, massive impact is to create more awareness for the products, services, and support that are available, so I’d love to focus more on community building. When I was first dealing with Crohn’s, I was not aware of the products, services, and people out there that were available to help me overcome. Out of instinct and pain I sought them out and created resources for myself, which was key to remission. If I could go back in time where that community already existed, and someone introduced me, then things would’ve been easier to deal with and I would’ve found a way out much faster. My goal is to try and bring us together in a community form beyond just introducing patients to Complete Start.

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

The real answer is I was initially afraid to leave the house. I was afraid to be seen and covered in acne—steroids destroy you. Now, I want everyone to know that the fear they are feeling is not just them and someone like me can help alleviate those fears and show them the path. If I was able to breakthrough and overcome, they can too. It’s others in the community and the validation that I get from them when they reach out and say I read your story and it made me believe that perhaps I can get there too who inspire me. Other people continue to fuel my fire and my desire to keep getting out there to make sure that others are aware and can receive the comfort of a blueprint for healing. 

Lastly, what do you do for fun to manage the stress of running a business as both a person with IBD 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. There is one key and I think that it is just as important as food—it’s exercise. I mean it very passionately—I am a daily hardcore gym goer and when I go to exercise, I go hard. When I do, I feel tremendously better. Movement and consistent exercise is the only way to complete the healing puzzle and again, that is another element that people have control over. Jon Margalit exercise fitnessI would recommend to anybody who is suffering out there first to test, then heed to Dr. Sandborne’s advice of eating what makes you feel good, and you’ve got to be consistent with exercise. Don’t just go through the motions—do it with purpose and passion. Push yourself physically because there is no bigger healing element in the world. The blood flow, endorphins and sense of accomplishment after a workout is the single most impactful driver to get me into remission. Two things people will never regret are eating vegetables and working out. The exercise is the stimulus to the right blood flow and right state of mind to tackle disease and career—both mental and physical battles. There is no better way to deal with the pain and discomfort of IBD than exercise.

On Letting Go + Self Acceptance While Living With Multiple Sclerosis

The Ideal Self is an idealized version of yourself created out of what you have learned from your life experiences, the demands of society, and what you admire in your role models.

My former ideal self was a smart business owner and writer who had a funny blog and a thriving consulting business. She also wrote a book.

My real self was, and is, a person living with a chronic illness with symptoms that would never allow for any of that to become true. Symptoms like brain fog, racing thoughts, and clinical depression. I’ll get into specifics of each symptom in subsequent posts but here’s the definition of brain fog so you can get an idea.

Brain fog can make a person feel as if the processes of thinking, understanding, and remembering are not working as they should. It can affect their: memory, including the ability to store and recall information.

I clunge so desperately to my vision of what life should be. Of who I should be. Even though I could never be.

I wanted to be like everyone else.

But my brain isn’t like everyone else’s. I kept getting disappointed. And depressed. I remained insecure and I was my own biggest bully. Brain fog made me feel stupid, like a loser, and to me, there was nothing worse I could be. It was unacceptable.

It felt like my mind was a melting pot of chaos. And I wasn’t making it any easier. I was too busy trying to improve myself instead of healing myself.

It was a vicious cycle that was powered by a disturbed mindset. A mindset that said I was the problem. And if I would just change the bad qualities that were bestowed upon me by MS, I would be able to live a happy ideal-self life.

My mind was an unsupervised circus and I attempted to reign myself in with therapy, meditation, medication, spiritual stuff, Instagram quote stuff, religious stuff…ALL THE STUFF. I just wanted to feel better. But mostly, I wanted to achieve whatever goals I set for myself at any given time.

I probably released an ocean’s worth of cortisol during this time because as I’ve said, that is impossible.

CUT TO:

My mind didn’t allow me to let go of my expectations until it was ready.

It was a Thursday in January 2019 when it finally clicked. I was in therapy and verbalizing my racing thoughts. It just came out.

“I am a sick person playing the role of a healthy person.”

I shocked myself, and when the doctored uncharacteristically nodded his head yes, I knew it was time.

Saying it out loud made it real. But also, I had reached a dead end. Each time I tried something new, I did some mental gymnastics and found ways to convince myself this time was different. I wouldn’t fail because (insert skillful justification here.)

This time I tried to become a freelance writer and editor on Upwork. I was chill about the process but quickly learned I’m not capable. The market demands 5000 words for $2 and quick turnaround times. I’m slow like molasses. I realized there was no way I’d be able to deliver quality work consistently.

I gave up one last time. I retired. I was tired, mostly of myself. Things needed to be different. I had a new goal: no new goals. Retirement was about taking it easy. I had spent so much time on my self-help journey so I was already equipped with a mental health tool kit to take me through my days. I also had a new responsibility that was more important: Valentina.

Not trying to live up to an unreachable standard set me free. I felt empowered because I suddenly released the blame. Surrendering made me feel in control. I accepted my lane and no longer felt stupid. I felt like a person who has multiple sclerosis.

I let go and accepted my messy life. I try my best and give myself space when I don’t think it’s good enough. I’m figuring out what I think is good enough. It’s always going to be a journey. For now, I’m buckled in and ready for what’s next. I will certainly keep you posted.

Originally posted on Medium.

Inside the Patient Entrepreneur’s Mind: John Wilcox

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. 

John Wilcox is the CEO & Co-Founder of Diatech Diabetic Technologies, Inc. 

As a patient entrepreneur, can you describe your personal experience with diabetes from diagnosis through your current daily management and how this experience drove you to innovate the space? 

In 2005, I was diagnosed on my ninth birthday. I figured the only way to come out on top was to make it a positive experience. Growing up, I really identified with the disease and now use it as an opportunity to empathize with others with chronic disease. I wanted to go to medical school, and still might, but this opportunity came up in college to develop intellectual property—what is SmartFusion today.

I took on the business full-time post college graduation of May 2019. My diagnosis gives me a leg up on how to develop technology to help diabetes patients. As a collective community, we can appreciate when someone with a disease can relate to us and effectively create change. My condition is something that I can share and allows me to connect to people and understand how other people are struggling—it is one of the best gifts that I could ever ask for. I don’t know what I would do with my career without this diagnosis because it has turned into a passion to help others and a lesson on how to make the best of situations.

What makes SmartFusion unique and how does it meet an unmet need of the diabetes community?

SmartFusion is a new infusion set that can more accurately tell you if insulin delivery is actually getting into your body. SmartFusion is unique in the fact that it helps patients understand if they are getting insulin.  Insulin pumps on the market right now are not really meeting the standard of being able to tell patient users if their insulin delivery is effectively working. We noticed the issue of infusion set insulin delivery failures where pumps can have issues with insulin delivery efficacy.

Personally, I have had issues going into DKA because of insulin mis-delivery.  I went to an endocrinologist in college who blamed me for poor A1C control rather than it being a technology/pump failure. I want to provide technology that can deliver alerts before hyperglycemia because it happened to me and it is very dangerous. Fixing this unmet need of pump reliability can take one thing off the list of what patients and caregivers go through regarding issues with diabetes care.

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

In the future, I would love to focus on software for pumps. There has been great work on hardware that is safe and effective for patients with diabetes but a real gamechanger could be software that pairs any type of CGM with any type of pump. The diabetes “hacker” community is already pairing their own CGMs with pumps but are not following standards of the industry.

Additionally, there is a lot that needs to be addressed in education, especially how to learn to effectively use diabetes technology for parents of children with the disease.

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

 My inspiration and motivation comes from talking to people who have the condition. I want to make sure the diabetes community is affected and impacted in a positive way. Stories from patients about issues with diabetes care like insulin mis-delivery keep me up at night.

Lastly, what do you do for fun to manage the stress of running a business as both a person with 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?

I love to run whenever I can and I find it a very clearing activity. My goal is to John Wilcox 5k racerun the Boston marathon for the JDRF. In terms of advice for other patient entrepreneurs, we have a disease that can help connect us to other people that have the same chronic illness. However, each patient story is unique so taking the time to recognize that is important. For example, my parents helped me get appropriate care at a young age by providing insurance coverage. How dare I compare my journey to patients I meet now, who are in their twenties, who are still without coverage to get insulin. In a nutshell, know that your story is unique and craft a connection to fellow patients based on that fact.

 

 

Going Digital When You Have MS

ORIGINALLY PUBLISHED ON MS SOCIETY| 07 SEPTEMBER 2018

Technology is so embedded in our everyday lives that I’d challenge anyone to go more than a couple of minutes without using something digital.

 

But what is the future for digital when it comes to helping people with MS? When I was diagnosed ten years ago, I ended up feeling very disengaged from the healthcare system. Now I wonder whether digital solutions could have helped me have a better experience.

How technology helps me with my MS

I use technology for many things relating to my MS and the biggest emphasis is on information and knowledge. When I was diagnosed with MS, I gathered enough literature to fill a bookshelf.

Now, the majority of my information needs are met digitally. I have access to a wider variety of digital information, via the internet, smart devices and patient portals. I’m more informed and can make shared decisions with my healthcare team. The next step is that I want to be able to more easily share my health records with all my doctors, because I’m not just my MS.

CLICK HERE TO FIND OUT HOW TRISHNA USES TECHNOLOGY TO SUPPORT THE MANAGEMENT OF HER MS! 

 

SuperBetter Partners With Psych Hub To Provide Videos About Mental Health

People around the world play SuperBetter to be stronger and more successful at achieving goals and overcoming challenges across many areas of their lives, including their mental health.

Today, we have great news to share — especially for those playing SuperBetter to tackle depression, anxiety and other challenges related to mental health. Psych Hub has partnered with SuperBetter to provide access to a library of high quality educational videos featuring mental health topics. These videos are available at no cost to the SuperBetter Community.

Psych Hub is a mission-aligned organization that has created a library of short, educational videos on various topics related to mental health such as depression, anxiety, bipolar, PTSD, eating disorders, and evidence based treatments. It was founded by Marjorie Morrison, former CEO of PsychArmor Institute, (a non-profit organization dedicated to providing free online courses about an array of issues of interest to the military community and their families), and Patrick J. Kennedy, former congressman of Rhode Island, mental health advocate, and founder of The Kennedy Forum.

Psych Hub’s mission is to spread greater knowledge and awareness about mental health issues and to decrease the stigma associated with them. By combining clinical research with the art of storytelling, Psych Hub videos provide mental health education that is accessible to everyone.

Psych Hub is partnering with respected organizations like SuperBetter as part of its commitment to bringing accurate and reliable information about mental health to a broader audience. As a partner we have our own page on Psych Hub for the SuperBetter Community. On this page are many videos that we think SuperBetter fans and users may find of interest. We invite you to click over, check them out, and share them with your family, friends, colleagues, and communities!

Two and a Half Years After Chemo, I Take Inventory of My Healing

Part of my goal with ABSOT is to create a resource for the newly diagnosed to understand what lies on the road ahead. I detailed nearly every moment of my chemotherapy treatments and began writing a series of posts of how recovery was going after finishing chemo. I wrote these posts at the two monthsfive months, and twelve months post-chemo marks, respectively. However, after the last one, I really dropped the ball on continuing the series.

But today marks thirty months post chemo, or two and a half years for people who don’t count anything over a year in months. Looking at you, new moms who insist on telling me your kid is 16 months, 3 weeks, 2 days, and 6 hours old. Your kid is one. Move on.

But I digress. True to the fashion of the other “Months Later” pieces, I’ll give an update on how my physical and mental recovery, after facing chemo, has been going since the last update.

Physical healing remains strong, with a few slight problems.

 

In the “Twelve Months Later” piece, I mentioned that I wasn’t feeling any nausea or fatigue anymore. This remains true today. I haven’t vomited at all since the ‘BRATman Begins’saga and I would even venture to say I’m in the best shape of my life.

I also mentioned in that post that my hair fully grew back and I was contemplating a new style. I’ve finally decided on a new one… a year and a half later. Stay tuned! Another holdover from that same post is my disdain for plain water. While I don’t hate it anymore, I still prefer it with lemon – or even a lime if I’m feeling wild.

However, a number of new strange symptoms have cropped up in the past six months or so. Mainly, I’ve been experiencing excessive sweating (even in cool temperatures) and had some weird pains here and there. So far, blood work has ruled out thyroid or hormonal issues, and I’ve had an ultrasound that I am still waiting on the results (as of this publishing).

Overall, aside from these new symptoms, I would be confident in saying that my physical health is 99.9999% back to normal – a full 0.0009% higher than in January 2018.

Mental health continues to ebb and flow.

I still have some slight difficulties with memory and attention, which I credit to chemo brain. Over the weekend, I participated in an online study that confirmed my short term memory and concentration are below average and my spatial awareness and ability to split my attention are right on the money. Interestingly, my ability to quickly scan and process information is actually above average. However, I don’t have a baseline to draw from originally, so who knows if that’s actually due to chemo brain, “old age,” or undiagnosed ADHD?

Worrying about scans is a constant, too

Probably the single biggest difference between January 2018 and now is mental health fluctuations. Back then, after realizing how I was experiencing depression, I had just started on antidepressants. At first, they didn’t seem to help too much. Finally the correct dosage kicked in and has been helpful in keeping me balanced since then.

Recently, I’ve noticed that I’ve been struggling a bit more than usual with my mental health, so I’ve begun seeing a therapist who I’ve seemed to connect well with. I’ve gone twice thus far, and we’re working on a roadmap to help me navigate the sea that is cancer survivorship and life. In a few months, I’ll probably write a more detailed post about therapy and how it’s been helping.

All in all, my mental health is doing much better than it was right after facing cancer, but it’s always in the forefront of my mind.

I’ve said it once, and I’ll say it again: Being a cancer survivor is complicated.

I firmly believe in the value of sharing my full story in hopes of letting others know that it’s ok to not be ok. While this piece was largely the same as the “Twelve Months Later” piece, it’s important to share these moments so others know what to expect on the road ahead.

It’s also critical to note that my left testicle has still not grown back, even after all this time.

Though I still hold out hope, the local hospital has told me that, “infusing your DNA with that of a salamander will not help you to spontaneously regrow a testicle and for the last time, please stop calling us unless you have a true medical emergency.”

A self exam is how most cases of testicular cancer are detected early. Click the image for video directions or click here for a larger version

 

Want to work with Justin? Click here to learn more.

All Roads Lead To Wellness: How Our Different Backgrounds Led Us To Lyfebulb

Katie:

In May of 2019, I joined Lyfebulb as the new Community Manager. Like many patients (including Ambassadors and Entrepreneurs) part of the Lyfebulb community, my health journey has not been easy. I struggled with chronic, neurological Lyme disease for close to a decade. The lack of awareness of this chronic illness prolonged my receiving of adequate treatment because of the inability to get properly diagnosed. Once diagnosed, I spent years researching all that I could about chronic Lyme and making all possible lifestyle changes within my control (diet, exercise, sleep hygiene, chemical-free product substitutions) to get myself out of a state of illness and into one closer resembling “wellness”.

After I could finally see the light at the end of the tunnel and observed marked changes in my symptoms, I learned how important support drawn from shared chronic illness experiences are to improved disease management and in certain cases, remission. Through this realization, I went to culinary school to learn the intricacies of preparing healthy yet still delicious food so that I could more thoroughly stay true to my commitment to wellness. My chronic illness ultimately taught me how to thrive in life, directing me towards likeminded people who have had similar health journeys.

At the age of 27, I now work for Lyfebulb in order to help build the chronic disease community that I wish I had from the start of my health journey–especially during my sickest years. Chronic illness strips you of hope and the natural instinct of a chronically-ill person is to curl up and isolate from the rest of the world. My goal is to encourage others who are either creating community or innovation around their disease to come together so that we can make the impact of patient-driven innovation and messages of how to thrive with chronic illness, or of wellness, that much stronger.

Jamie:

I joined Lyfebulb in June of 2019. My role includes the development of partnerships, execution of Innovation Summits, and the management of Lyfebulb’s Patient Entrepreneur Circle. I came to Lyfebulb with a different background than most of my colleagues. Unlike Katie, Karin, and our extended community, I do not suffer from chronic disease, nor do I have loved-ones who do – or so I thought prior to joining Lyfebulb.

Though fortunate on to this end, health and wellness has always been a high priority. With northern California roots, it was instilled upon me at a very young age that it is more than just a lifestyle choice – it is necessary to keep the body and brain sustainable.

Formally, I geared my educational studies towards art history and business. After school, I landed a dream job in the field at an art market transparency company. Four years later, I found myself feeling unfulfilled. Though art will always be a passion, I sought out to find a field where I could make more of an impact.

I found Lyfebulb by chance, attending the UnitedHealth Group Summit activation event for depression and anxiety. Shortly thereafter, I joined the Lyfebulb team and brought the UHG Summit to fruition. Though grateful for my time spent in art, I am grateful to have returned to my path of wellness and health, and look forward to where it will take me.

Lyfebulb and UnitedHealth Group Announce The Winner of Their 2019 Innovation Challenge for Patient Entrepreneurs

Challenge brought together 10 finalists who are building solutions for those affected by depression and anxiety

MINNETONKA, Minn., and NEW YORK (July 24, 2019) Lyfebulb LLC and UnitedHealth Group (NYSE: UNH) are pleased to announce that Rohan Dixit of Lief Therapeutics was selected as the winner of the “Addressing Unmet Needs in Depression & Anxiety: An Innovation Challenge.” Lief Therapeutics has developed an intuitive, data-driven wearable consumer product for anxiety used to teach the skill of mindfulness using heart rate variability.

Rohan was selected from a group of passionate innovators who were finalists in the Challenge, including Jay Brown of Health Behavior Solutions; Matt Loper of Wellth; Lisa McLaughlin of Workit Health; Katherine Ponte of ForLikeMinds; Jan Samzelius of NeuraMetrix; Dr. Ryan Stoll of COMPASS for Courage; Dr. Mehran Talebinejad of NeuroQore; Quayce Thomas of Timsle; and Keith Wakeman of SuperBetter.

Dennis Urbaniak, Chief Digital Officer of Havas Health & You, who served as Chair of the Jury commented, “Rohan not only has a mission and purpose that aligned with the criteria of the challenge, but also has taken a conventional approach and reimagined it through the patient experience with evidence-based science behind it. Additionally, he has identified viable pathways to commercialization.”

The Innovation Challenge was open to established companies of all sizes that are founded or led by an entrepreneur who has been affected by depression and anxiety, whether as a patient or through a loved one, and who has created a product or service to address an unmet need identified through personal experience. The 10 finalists gathered at UnitedHealth Group’s headquarters for two days of meetings, workshops and pitch presentations. The event culminated with a panel of esteemed judges selecting Rohan Dixit for the $25,000 award.

“Partnering with UnitedHealth Group for a second year in a new therapeutic area which impacts all of healthcare is tremendous for Lyfebulb,” said Dr. Karin Hehenberger, Founder and CEO of Lyfebulb. “We have established a community of people affected by and caring about depression and anxiety, from which we sourced ten exceptional patient entrepreneurs to join us in Minnetonka over the past few days. Their passion and determination to solve daily issues that burden so many individuals came through clearly during the pitches.”

The judges included experts from the patient, business and medical communities including Mike Christy, Senior Vice President of Venture Development at UnitedHealth Group; Dr. Raja M. David, Founder and Owner of Minnesota Center for Collaborative/Therapeutic Assessment; Matt Kudish, Executive Director at NAMI-NYC (National Association of Mental Illness); AnnMarie Otis, Patient Advocate; Dr. Bethany Ranes, Research Associate at UnitedHealth Group; and Dennis Urbaniak, Chief Digital Officer at Havas Health & You.

“Through this innovation challenge, we learned from patients and caretakers who live and breathe the challenges of this disease every day,” said Dr. Deneen Vojta, Executive Vice President and Chief Medical Officer of Research & Development at UnitedHealth Group.  “We see depression and anxiety touch all populations we serve and we valued the opportunity to bring together entrepreneurs, health care providers, patient advocates and business leaders at the summit. Together, we can help bring the most innovative, effective tools – inspired by personal experiences – into the marketplace.”

Interests - Select all that apply