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Inside the Patient Entrepreneur’s Mind: Liz Sacco

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

Liz Sacco is the President & Founder of Diabetic Dabs. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Inside the Patient Entrepreneur’s Mind: David Hojah

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

Wearing a Diabetes Medical ID On-The-Go!

Medical ID Bracelets

Living life on-the-go can be fun and busy, however, doing so with a chronic illness requires a few extra steps and planning along the way.

 

Hi, my name is David and I have been living with Type 1 Diabetes for 10 years now. I was diagnosed at the age of 11 and let me tell you… I have been through a lot. In living with this disease, I have been able to experience so much and learn from my mistakes. In doing so, I have come to realize that as a diabetic, I am one of those who should wear a medical ID and why it’s important for all life’s experiences.

For years on end, I never wore a medical ID bracelet. I could never find a bracelet that I simply liked or wanted to wear daily. When I became a part of the Diabetic Online Community (DOC) back in 2014, I was exposed to several different people who shared the same struggle. I also saw a variety of amazing brands and companies who understand this struggle and have found ways to make ID bracelets, dog tags, necklaces, and more so much nicer and pleasing to the eye and the patient. I own several different medical ID bracelets, I think when one finds their style with Diabetes, it’s always nice to have options and create your own look, which is why owning multiple forms of emergency ID that go with different looks is a great idea!

I have mentioned several times on my Instagram, @type1livabetic, that when wearing my personalized Paracord bracelet from American Medical ID, I felt so very safe. I felt as though if anything Diabetes related could go wrong, I would be prepared. On my engraved bracelet, my name, condition, and emergency contact information were all located on a small piece of metal, attached to the Paracord bracelet. At a recent trip to Disneyland with a large group of people who also had Type 1 Diabetes that could vouch for me if there were to be an emergency, I still encountered times in which I was alone at the park (walking to and from my car, walking to meet the attendees, or simply stepping to the side to grab a snack), rest assured, I was confident with my Diabetes at the time.

So why is it so important to wear a form of medical alert jewelry for Diabetes? Well, not to get too dark or technical, however, the fact remains that we do have Type 1 Diabetes that does come with some symptoms and consequences. If our blood sugar drops significantly low, we could pass out and become unconscious or go into a coma. Same with high blood sugar, if we are severely high and go into DKA, we could in fact experience some symptoms that could limit our ability to function, which can prevent us from acting in the moment to get help. Say you were in public, alone, and you experienced one of these symptoms, if you were wearing a medical ID, someone nearby would mostly likely come to check for various hints or signs on you if something doesn’t look entirely right and search for an alert jewelry in particular sites on the body: wrists, around the neck, tattoos, etc.

In being diagnosed with any chronic disease and being told you have to take extra care of yourself can be a lot, however, allowing yourself some relief by wearing a form of ID can truly reduce a lot of the stress surrounded by various diseases. One should never leave the house without some form of ID as you never know when these emergencies could happen.

American Medical ID Healthy Packing List

The CDC includes having a form of medical identification such as alert bracelets, necklaces, or wallet cards as part of a healthy travel packing list.

I believe that some may also feel safe in knowing that they have a medical ID card in their wallet as well, for added peace of mind. One should also wear a form of ID at home, just in case. For those who live alone, I understand that it may feel as though you are not in need of wearing an ID at home as you will be alone, but that could just be the very tool that can keep you alive, say you have an emergency, it could be that neighbor walking by and seeing something isn’t right that could barge in and save your life and being able to identify you have a particular medical condition that needs attention.

We each have our own busy lives that takes up so much time and mental focus away from our health, which is why wearing medical alert jewelry can protect us as we are on the move, daily. School, work, the playground, a coffeeshop, wherever you may be, ID is necessary. No matter how old the patient is, whether a child, teen, adult, or elder, wearing a medical ID all the time can protect us from the dangers of our diseases and more.

 

Live well,

David

The Implications of Using CBD for Chronic Conditions: Here’s What We Know

Cannabidiol (CBD), a non-intoxicating compound in cannabis, has become a popular alternative to pharmaceuticals. CBD users can sometimes find relief from their conditions without harsh side effects. 

41% of cannabis users surveyed report swapping out other medications completely in favor of cannabis, while another 58% use cannabis and other medication or alternate between them,” researchers stated in a survey by Brightfield Group

While CBD may be a beneficial alternative for chronic conditions, it’s important to consider the implications of using CBD before changing your current regimen.

Diabetes

Studies have suggested that inflammation has a correlation with insulin resistance. This may be the result of the body not moving sugar from the bloodstream into cells, causing excessively high blood sugar. Obesity-related inflammation particularly limits glucose metabolism, resulting in high blood sugar. 

Researchers still don’t know exactly how CBD improves insulin resistance, but often credit it to the compound’s anti-inflammatory effects

According to a report on Type 1 diabetes from the Diabetes Council, “CBD can save insulin-forming cells from damage so that normal glucose metabolism can occur.”

It’s important to note that most claims being made are based on studies with animals, not humans. Using CBD to treat diabetes without more substantiated research and medical oversight could be dangerous. Until further human studies are conducted, CBD can’t be considered a direct treatment for diabetes. 

However, the anti-inflammatory effects of cannabidiol may be beneficial for managing secondary symptoms from the disease. For example, CBD has neuroprotective qualities and may prevent retinal damage.

Cancer

While there is anecdotal evidence of successfully treating cancer with CBD, no definitive studies can back this up. However, we do know that CBD plays a role in cancer prevention and seems to have anti-tumor effects. In a 2012 report, researchers explained, “Evidence is emerging to suggest that CBD is a potent inhibitor of both cancer growth and spread.”  

The U.S. National Library of Medicine explains that CBD is anti-proliferative, meaning it can stop, slow down, or reverse the growth of cancerous tumors. It is also anti-angiogenic, meaning it does not support the generation of new blood vessels, specifically ones that allow cancerous tumor growth. Lastly, it is pro-apoptotic, which means it induces cellular suicide of cancerous cells. 

In addition to these cancer-specific effects, CBD may help patients dealing with pain related to cancer treatment, such as pressure on the organs and nerve injuries. Patients with cancer are commonly prescribed opiates to manage pain, but managing pain with CBD may be just as effective with fewer side effects.

Unlike opiates, which mimic our bodies’ natural endorphins, CBD actually encourages the production of natural endorphins by interacting with a neurotransmitter called anandamide. As a result, CBD is a non-habit-forming pain-reliever. 

It’s important to consider the legal implications before using CBD for cancer, or any other chronic condition. Hemp-derived CBD is legal across the United States, with specific guidelines per state. Idaho, Nebraska, and South Dakota have strict, conflicting rules regarding CBD, so caution should be taken if you live in those states. 

Whatever state you’re in, be sure to get high-quality CBD from producers who follow the guidelines of the law. 

Multiple Sclerosis

According to Neurology.org, “inflammation occurs in the brains and spinal cords of people with a specific kind of MS called relapsing-remitting MS.” CBD has been shown to protect against this harmful inflammation

In a 2011 study with mice, researchers found that CBD diminished axonal (nerve) damage and inflammation. CBD also reduced microglial activation, an inflammatory process that occurs in the central nervous system and is attributed to conditions like MS, Parkinson’s, and more. 

CBD may help users get relief from their MS without causing the sometimes intense side effects that come with pharmaceuticals. Still, CBD may cause some side effects that users should be aware of. Side effects may include:

 

  • Anxiety
  • Changes in appetite
  • Changes in mood
  • Diarrhea
  • Dizziness
  • Drowsiness
  • Nausea

Anxiety and Depression

The hippocampus, the most widely studied portion of the brain, is responsible for the regulation of memories and emotions. Researchers believe the hippocampus plays a major role in depression, and have found that this region of the brain can shrink or decay in those with depression.

Fortunately, the shrinkage does not have to be permanent. The brain is very regenerative and can bounce back as new neural connections are made. This process is known as “neurogenesis” and is an important process to target for antidepressants, contrary to the prior belief that they just work to increase serotonin. 

Where does CBD come in? Research has shown that cannabidiol signals a serotonin receptor called 5-HT1A. This receptor is responsible for controlling many neurotransmitters, and is also the target of some anti-anxiety medications, like Buspirone. Activating this receptor can encourage neurogenesis, and potentially relieve symptoms of anxiety and depression. 

While each individual case is unique, anxiety and depression tend to go hand-in-hand. CBD may encourage the neural regeneration necessary to find relief from either or both conditions. 

Inflammatory Bowel Disease

Inflammatory Bowel Disease (IBD) is caused by — you guessed it — inflammation. A 2009 study found CBD was beneficial for colitis, a form of inflammatory bowel disease. Researchers induced colitis in mice and tracked their gut inflammation, finding that “cannabidiol, a likely safe compound, prevents experimental colitis in mice.”

Another review found “this compound may interact at extra‐cannabinoid system receptor sites, such as peroxisome proliferator‐activated receptor‐gamma. This strategic interaction makes CBD as a potential candidate for the development of a new class of anti‐IBD drugs.”

If you’re considering using CBD with other medications, consult your doctor first. Much like grapefruits, CBD inhibits the cytochrome P450 enzyme, which can prevent drugs from metabolizing properly. 

CBD could also negatively affect the liver by increasing liver enzymes. A 2014 review of CBD saw changes in the liver function of 10% of the subjects, and 3% had to drop out of the study to prevent further damage. Again, consult with a doctor if you want to use CBD for a chronic condition like IBD but are worried about the effects on your liver.

The Bottom Line

Americans spend around $1,200 on prescription drugs each year, which is more than the residents of any other developed country. The price of pharmaceuticals has risen without any improvements or innovation, according to CNBC. This makes CBD an exciting avenue as a potential alternative to standard pharmaceuticals.

It’s important to remember that the effects of CBD will vary by person, and that a lot of the claims we hear about CBD are in relation to animal studies and not humans. It’s also important to be as informed as possible before diving into the complicated world of buying CBD.

Still, many people find success with CBD for their chronic conditions. 

 

Macey Wolfer HeadshotMacey is a freelance writer from Seattle, WA. She writes about natural health, cannabis, and music.

Lyfebulb and Celgene Announce Finalists for 2019 “Addressing Unmet Needs in MS: An Innovation Challenge”

Lyfebulb and Celgene Announce Finalists for 2019 “Addressing Unmet Needs in MS: An Innovation Challenge”

Finalist patient entrepreneurs recognized for potential of innovations in multiple sclerosis (MS)

Image at Celegene 2019 challenge

NEW YORK, May 10, 2019 /PRNewswire/ Lyfebulb, a chronic disease-focused, patient-empowerment platform that connects patients with industry to support user-driven innovation, and Celgene Corporation (NASDAQ: CELG) announced the 10 finalists chosen for the Lyfebulb-Celgene 2019 “Addressing Unmet Needs in MS: An Innovation Challenge.”

The following finalists will compete at the Innovation Challenge Summit on June 13, 2019, for a $25,000 monetary grant to further develop their proposed innovations:

Celgene Logo with tagline

  • Abilitech Medical, Shawna Persaud: Medical device intended to help people with MS with mobility challenges use their arms
  • AXS Map, Jason DaSilva: Web platform that allows users to locate, rate and review the accessibility of any location in the world
  • BeCareLink, Alan Gilbert: Predictive artificial intelligence (AI) digital therapeutics platform which remotely measures clinically validated assessments of cognition and motion to help improve quality of care and reduce costs for people with MS
  • C. Light Technologies, Inc, Zachary Helft: Neurotech and AI technology using eye motion measured on the cellular scale to monitor disease state in people with MS for treatment efficacy feedback
  • Dance4Healing, Amy Li: AI-powered telehealth live video platform which brings community, exercise and physical rehabilitation into the home to encourage healthy behavior change
  • Icometrix, Wim Van Hecke: AI-based brain imaging solutions to monitor disease progression
  • Leoplus USA, Kinza Kasher: Device and app which aims to support communications between patients and care partners
  • Loro co., David Hojah: Socially assistive companion robot for people with mobility challenges
  • Moodify, Kate Milliken: Web-based tool which builds communities, aims to reduce loneliness, creates searchable content moments and tracks the emotional journey
  • ThermApparel LLC, Bradley Dunn: Lightweight, comfortable and concealable cooling apparel for people with extreme heat sensitivity

“At Lyfebulb, we build communities of patients with chronic disease around a message of inspiration and hope for the future. Each of these patient entrepreneurs is inspirational, as they have taken their frustrations of living with their disease – or observing it in a loved one – and are working to turn those insights into business solutions to help members of the MS community live their daily lives more comfortably,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb.

These finalists are being recognized as outstanding patient entrepreneurs – those who have been affected by MS as either a patient, loved one or support partner – whose companies are helping develop solutions to address an unmet need in MS. A “pitch session” will be held at the Challenge Summit, and a winner will be chosen by a diverse group of experts in the MS, healthcare and business communities. The panel of judges will include:

  • Tim Coetzee, PhD: Chief Advocacy, Services and Research Officer, National Multiple Sclerosis Society;
  • Adam Fine: General Partner and CEO, Windham Venture Partners;
  • Elizabeth Jones: MS Patient Ambassador;
  • Darin T. Okuda, MD, MS, FAAN, FANA: Director, Neuroinnovation Program, Multiple Sclerosis & Neuroimmunology Imaging Program, UT Southwestern Medical Center; and
  • Deneen Vojta, MD: Executive Vice President, Global Research & Development, UnitedHealth Group.

“We are excited to bring together these patient entrepreneurs, judges and members of the Celgene and Lyfebulb teams for an engaging and interactive summit,” said Terrie Curran, President, Celgene Inflammation and Immunology. “Ultimately, we hope to foster discussion about ways to advance innovation in the space and look forward to awarding this grant that will help support people with MS and their families.”

About Multiple Sclerosis
Multiple sclerosis (MS) is a chronic, often debilitating disease that affects approximately 2.5 million people worldwide. In MS, an abnormal response of the body’s immune system causes inflammation and damage to myelin—the substance covering nerve fibers—in addition to damage to nerves themselves. Signs and symptoms are varied and can pose significant challenges in daily life.

About Lyfebulb
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry (manufacturers and payers) to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, and depression/anxiety.

See www.lyfebulb.com, Facebook, Twitter, Instagram, Karin Hehenberger LinkedIn, and Lyfebulb LinkedIn.

About Celgene
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next-generation solutions in protein homeostasis, immuno-oncology, epigenetics, immunology and neuro-inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.

For inquiries, please contact:

Lyfebulb
Karin Hehenberger, M.D., Ph.D., CEO
917-575-0210;

A Spot of Frustration

My son is now 18, but at the time of this original post on A Spot of Hope, he was only 17. Andy was diagnosed at age 4 with psoriasis and age 5 with juvenile psoriatic arthritis. Life has been a roller coaster ever since, especially when it comes to pharmacies and insurance. I’m sure so many of the chronically ill, but chronically fabulous, readers can relate to what happened back in April. It’s a never-ending battle.

Dealing with pharmacies, insurance and lack of respect has me feeling frustrated!

aspotoffrustration-photo

By the time my kid gets his biologic medication delivered, he will have been one month without taking it. No wonder he wants to sleep all day and has a bad case of brain fog! (Oh wait, maybe that’s just being a teenage boy…)

Anyway, one thing is for sure. He’s hurting. Don’t let his attitude fool you. He hides his pain well when it comes to his psoriatic arthritis.

So, why has it taken so long to get the medication? It’s been the perfect storm of mishaps that started nearly four weeks ago.

First, the boy didn’t tell me he was out of medication. We’re trying hard to transition him to the realities of college life and that his parents won’t be there to order his medication or administer it. So far, this life lesson could be going a lot better.

Next, I knew we couldn’t get the medication refilled without getting his labs drawn. I took him to do that, but the standing order script had expired. Luckily, the hospital took pity on us and gave him a courtesy draw.

The next day, I called his doctor’s office and spoke with a nurse. She said that she needed his lab results before the office would refill the medication. I explained that the labs were drawn yesterday and that his general practitioner who also receives a copy of the results had already called and said everything was normal. This did not satisfy the nurse, and I was told that I would need to call the hospital to get the results faxed to her. Unfortunately, I could not do that at the time because I was on my way out the door to an important meeting. She said it wasn’t her job to call and track them down, so we’d just have to wait until after the weekend.

Days went by and we were still waiting for some sort of update. That finally came with a call two weeks ago with Andy’s regular nurse. — Did I mention how much we love her? — She said the results finally updated in the system and she was refilling the prescription for him.

After waiting days for call from the mail-order pharmacy to schedule a delivery, I finally called them. The representative told me that they never received a new script, but there is still a refill left on his old script. Well, I tell her that’s not true because each time the script is written for three months only with no refills, and he gets a three-month supply delivered. Guess what happened at that exact moment? The new script just popped up on her screen. The doctor’s office must have just sent it over right then!

Really? How dumb do you think I am?

I wasn’t in the mood to play games or argue. I just sighed and said to fill it as soon as possible. But that wasn’t going to be possible. Why? Because we need a new prior authorization for the insurance!

The pharmacy representative assured me that they would be able to get the prior authorization and still have the medication delivered on Saturday. But, just in case, they would call if they ran into any trouble.

Needless to say, Saturday came and went. No medication. No phone calls.

No delivery on Sunday. After all, it’s Sunday.

No deliveries on Monday because the medication needs to be refrigerated.

No delivery on Tuesday.

I called early this morning to find out when this medication was scheduled to arrive. You won’t believe this coincidence! At the very moment I was on the phone with the pharmacy representative, the prior authorization came through!

Again, I wasn’t in the mood to play games. I just want the medication.

So, even though the medication hasn’t been delivered yet, I’m very hopeful — maybe naively hopeful — that it will arrive tomorrow. That will mean he’s been without his medication for nearly four weeks.

Every stage of this, there was a problem. I can be quick to blame Andy for not altering me sooner that he was out of medication. And, I can find fault with the nurse and the pharmacy. And, yes, I can even blame myself for not following up sooner. But, to do any of that would only prove fruitless.

The real problem lies in the big picture: The whole health system is a nightmare.

How can I transition my 17-year-old to take care of his own health in just a few short weeks when he turns 18 if I still haven’t learned to completely navigate it in the past 12 years?

I only hope that Andy plans ahead, asks many questions at every stage of the process, and has lots and lots of patience. That seems to be the only way to get through all of the red tape and nonsense.

And to think, he gets to do this all by himself in three months. Woo hoo!

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