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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!

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

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.

New Workout App for People With Diabetes – And Christel is an Instructor!

Have you ever dreamt of working out with a trainer who understands diabetes, who might even live with diabetes, and who gets what it takes to get through a workout without wonky blood sugars?

Well, that trainer could be me!

Today, my 12-week fitness program “STRONGER”, that I developed for GlucoseZone, is available in the GlucoseZone app. I’d like to personally invite you to come train with me. To join me for a program that will push you to be a stronger version of yourself.

Sign up HERE and use the “STRONGER” code to get 30% off your monthly subscription

The beauty of joining GlucoseZone is that you’ll get access to not only my program but to 6 other exercise programs, as well as live workouts, all developed specifically for people living with diabetes. You can do all of the workouts in your own home or bring it to the gym.

Regardless of your fitness level, you can find qualified instructors to take you through the workouts that are right for you, and always with your diabetes in mind.

One of the reasons why I’m so excited about working with GlucoseZone is that it’s the first-ever clinically validated digital exercise therapeutic for people living with diabetes, and it’s endorsed by the American Diabetes Association.

Stronger Getting Started

Sign up HERE and use the “STRONGER” code to get 30% off the monthly retail (You’ll only pay $9.09 per month) when you sign up for the GlucoseZone app.

 

Connect with Christel on Facebook: @DiabetesStrong; Instagram: @diabetesstrong_ig.

To End The Weekend In A Perfect Way

The human body is an incredible thing. Yes, it can fall apart and let you down, but it also holds amazing minds that dream up things like insulin and glucose pills that can save someone’s life and help you work around the parts of your body that can’t keep up anymore.

Weight isn’t everything — health is. I grew up battling an eating disorder and now that my focus is on health, and not weight, I feel much more connected to my body. It’s like meeting an old friend I haven’t talked to in a long time (and we have a lot to catch up on). Having to count, track and balance every bit of food or drink that goes in my body is definitely a trigger for me, but I’m getting to know what food makes my body healthy now.

It’s okay to be sad and let go.

There is no perfect health zone. There will be days when I can’t “beat” diabetes no matter what and there will be days when I need to treat myself and not focus on only eating things I know I can control well. Life needs little moments like that to stay sane and right now, the only path to staying happy I can see is one that embraces ups and downs and doesn’t try to turn them into a perfect straight road.

Last and most importantly: LIFE CHANGES. It is important to remember. Life looks and will not look the same even though we have a disease that will need the same type of treatment.

Working Out With No Obstacles

Hello friends! My name is Judy and I’ve been a T1 diabetic for 18 years now! You may know me from my Instagram account @hyper.hypo and blog/shop (www.diahyperhypo.com), and you may already know how much I love to help other T1s with my experiences and tips. I believe that diabetes should never be a limitation, and with a positive attitude and positive thoughts, it is easier to live with this disease that often feels like riding a rollercoaster.

I know that having T1 can often lead to a lot of questions:  ‘’Should I inject for this’’, ‘’Should I eat now?’, ‘’Should I tell people I’m low and not actually drunk?’’ However, in my opinion, one of the main subjects that us T1s tend to ask questions about is type one diabetes and exercise. A lot of diabuddies think that they need to workout less or not at all because of their numbers, or even limit themselves to a type of exercise but I am telling you with full confidence: THAT IS NOT TRUE!

I believe so much in the affirmation: ‘’Diabetes is not a limitation’’ that I decided to launch my own line of diabetes sportswear.

I decided to create something that will empower a lot of type ones when exercising: a sports bra with an integrated pocket to put the insulin pump (or PDM or supplies or phone, you decide!). I know that working out while having T1 diabetes brings extra responsibilities, so having a pocket that will let you have an intensive and satisfying workout will motivate you to get off your couch and move!

In my case, every time I work out, I feel good. You may think: ‘’Okay Judy that is so cliché!’’ It is, I have to admit it, but it’s the truth! Here are my 3 main tips that help me exercise with type one diabetes:

  1. It’s okay to change your schedule

Be mindful. Accept the fact that you didn’t stick to your workout plan. Accept the fact that you exercised during the evening and not in the morning like you planned to because of your numbers. Once you accept that your schedule might me modified, you will be happier while working out. Things happen!

2. Try to workout with no insulin on board

Working out in the morning works best because there is no insulin in the body (well usually). Sometimes, the blood sugar might spike, so it is important to know your body and to know that a correction might be needed. If there is insulin on board (meaning you injected yourself not so long before), you might need to set a temporary basal rate (if you’re on the pump) or try to inject less insulin before a meal/snack before a workout for next time.

3. Yes, what you eat is important!

Food. Everybody loves food, right? The thing with food is that it can give you instant satisfaction, but might get you lazy if you don’t eat something good for you. Eating a lot of vegetables, fruits and fibers will get you motivated and won’t make you say:

“Ugh yeah I’ll go to the gym tomorrow.” Eating proteins and carbs coming from non-fatty foods will make you feel good, help with your digestion, and affect your numbers before/ after a workout in a beautiful way!

And always remember: Train 30mn a day to avoid being tired 24h a day!

– Judy

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