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The call of disease

The call you will likely hear resound when illness comes is a battle cry. Fight. Beat. Kill or be killed. I heard this cry when disease came my way and I yelled back; “War.” I fought through. I muscled on. I battled. I steeled against. Put on a brave face. Held tight. Closed my hands into fists and held my breath. I shot, aimed to kill. Warrior, “you are so strong.” I allowed disease and the curveballs of chronic illness to harden me.

As I fought and battled to heal through the wild lands of hospitals and O.R’s, therapy and holistic medicine and what are they calling it now? Ah yes, “self development,” the song of self-love was often sung. I know, I would say. Yes. I would say. I will affirm ten times a day looking at my own eyes in the mirror that I love myself. Words, just words. An emptiness stared back. A sad confusion. I was at war, and I was loosing. My body, if not an outright enemy, was certainly not a trusted friend and most of the time a dreaded sea I was doomed to tread water in. Forever. Until I sunk.  In my battle with Ulcerative Colitis I tried many many treatments to “beat” the disease ravaging me, but I hadn’t tried love. 

This experience of loving my body is new and novel and unsteady. I waver. I catch a glimpse and revert back to shame and disgust in an instant.  But I have been bitten. A tender nip of the elusive “self-love.” What finally made the switch go off? I have no concise explanation. More therapy? That likely played a role. Marriage? Yeah, that too. Another period of surgeries and uncertainty? How could that be…

Regardless, through the lens of love I have come to believe that hardening against isn’t the way of disease. The truer call is to love. Gentle. Soften. Open. unclench those iron fists. The way through disease is with, not against. To take the sticky hand of our illness and say, “oops sweetheart, no, go this way instead.”

So, I give in. I lay down my sword. But, I do not give up. I choose to go with, to love the most unlovable, to yield, to shift, to submit. To ease. To slow. I relent. I still have one more planned surgery staring at me. I continue going to doctors and alternative therapies, diet, supplements and meditation. I continue to do the daily work to offer my body whatever I can to heal. But I will no longer fight. Actually, I probably will. This stroke of inspiration that overcame me in the small hours of the night will leave me. I will steel again,  hold my breath, push back, I will forget.  But then, I will remember. I will come back. Then forget. Forget-remember-forget and remember again. Love’s first bite has been soft, quiet, a gentle suggestion. Yet it whispers that If I feed it, water it, let it blossom and grow, it will devour me whole.

We all get to choose whether illness will soften or harden us. Free will. One final plug for softness with a quote from Marianne Williamson; “We do not get rid of darkness by hitting it with a baseball bat. We only get rid of darkness by turning on the light.”

Yes, go ahead warriors. Turn. On. The. Light.

 

Visit Cody’s blog here!

Exercising With Chronic Illness

Exercising is a little different for anyone living with a chronic illness. Some workouts trigger flare-ups in autoimmune conditions, while others cause discomfort or pain. Sticking to a regular routine is also difficult due to the many challenges brought about by one’s condition.

The goal of exercise is also a little different from most people’s. Studies have shown that physical activity aids in the management of chronic illness in many different ways. It reduces risk factors such as high blood pressure; it improves joint mobility; and it lowers the perception of pain, making it more bearable to live with. What that means is that improving quality of life through movement always comes first. Achieving a certain physique or becoming the strongest person in the room, then, are just secondary goals.

Adding to these unique considerations are today’s challenging times. With gyms closed and many people in quarantine, it’s important to remember to keep working out, as regular exercise can help in the prevention and management of chronic illness. Here are five tips that can help you get started:

1. Consult with professionals

Before trying out a workout, make sure to get the go signal from your specialist. Ask which exercises are good or bad for your condition and how much training you’re allowed to do.

Looking for a qualified trainer is the next step. While there are many free resources online, hiring a certified professional is ideal for people with specific needs. Graduates of exercise science degree programs have an in-depth knowledge when it comes to proper exercise prescription, which should be based on each individual’s unique needs. Training with a professional means your program will be customized around your condition instead of having to use cookie cutter routines that may not be applicable to you. Make sure to be open with your trainer about your specific requirements, so they can make adjustments along the way. And given that going to a gym right now is not safe, look for personal trainers who are giving online consultations as there are many. And if hiring a trainer is not possible, try working out with a partner — while practicing social distancing, of course.

2. Be prepared

By now, you are aware of what your condition needs as well as the different scenarios that might happen if you push too hard. That’s why you should always come to each workout prepared. Bring cover to avoid an asthma attack like a mask on your run, pack extra medicine into your bag, and have your emergency contacts on speed dial. Inform your family or housemates that you’re going out to exercise. You can even print out a route so they know where you’ll be.

3. Experiment with different workouts

Trying out different types of exercises is not only exciting, but it also gives you different options. There will be days that doing your usual routine will be difficult, so having backup exercises is a good idea. For instance, Pilates is a low-impact activity that can be a great alternative for when you can’t go for a run due to inflamed joints. It targets your core without putting too much pressure on your joints. Pilates studios are offering their classes online so you can get proper instruction from qualified teachers. There are a myriad of exercises waiting to be discovered by you online, so don’t be shy and keep trying them out!

4. Pair exercise with good habits

People who get hooked on exercise usually re-evaluate their other lifestyle habits, and you should, too! Take a holistic approach when it comes to improving your quality of life as these factors are all tied together.

For instance, anxiety is a common experience for people with Crohn’s disease. It’s easy to fall into a vicious cycle, as being anxious also causes flare-ups in the inflammatory bowel disease. A helpful solution to avoiding triggering those unhealthy cycles is to stick to good habits that naturally alleviate each of them. Exercise is a good place to start, but do also look at getting quality sleep, eating nutritious foods, and balancing your social life.

5. Be flexible

Being flexible doesn’t mean being a master at yoga. Instead, it means being ready to adapt to your circumstances. Skip a workout if you’re not feeling up to it. Or, find an alternative that won’t cause you any discomfort, like gentle yoga or meditation. It’s good to have certain goals, but you should also accept that your condition might sometimes get in the way of achieving them. Regardless of your situation, listen to your body and practice self-compassion at all times.

How to Stay Emotionally Connected During Social Isolation

In just a matter of days the world turned topsy-turvy. Last week I was in the Rhône Valley visiting vineyards for a work assignment with little access to world news. Then March 12 started a travel ban. We returned to the U.S. March 13. JFK Airport was eerily quiet at 5 p.m. when we arrived, usually a very busy time.

By Saturday, photos showed turmoil in the same location. Now we are hibernating at a time when we desire a joyful spring awakening, a week we usually go out to celebrate our wedding anniversary. Projects are on hold; three work trips for March and April are canceled. We are contemplating what’s next.

We accept life on pause. But it is disquieting. How do you process and cope with a situation that is changing by the day around the world and affecting so many people you know and work with? How do you manage anxiety creep? How do you feel less alone when your are socially isolating? What is the impact from all of this?

According to a 2017 report from Brigham Young University, social isolation can be harmful to your health, impacting physical and cognitive function, mental health and overall decline. Read this article “Social Isolation: It Could Kill You” from the American Psychological Association (May 2019) https://www.apa.org/monitor/2019/05/ce-corner-isolation.

Humans are naturally social creatures. Processing the directive to socially isolate is like telling us to wear our clothes inside out and shoes on different feet. We can do it, but it feels awkward and uncomfortable.

Here are some tips I hope will help

  • Go outside for fresh air. The days are longer and getting warmer. Being in nature will uplift your spirits and get you moving which increases your endorphins and helps generate a calming effect.
  • If you are working from home, which I do every day, create a quiet work space away from distractions to help you concentrate. Set aside a chunk of time to answer emails and check social media rather than throughout the day (unless that is your job). This will help you stay focused and be more productive.
  • If your mind is wandering, step away from what you are doing for a few minutes to reset. Try a five-minute movement break every hour. One of the advantages of working remotely is creating flexible hours to take advantage of when you feel more productive.
  • Manage the information you take in to avoid overload. The frenzy of news and social sharing is overwhelming. Limit television and social media screen times to specific times of the day and not late at night.
  • Call a friend at the start or end of the day to say hello. That person may also feel isolated. I try to call one person every day.
  • If your children are at home because schools are closed, this is a great time to do things together: read, cook, play games and music and limit all screen time. This is not the time to socially isolate within your own house.
  • Do something with your hands. I have friends who are quilting, cooking, gardening crafting and painting. I am not talking about doing chores; make it creative and enjoyable.
  • Finally, remember this: When the world seems complicated, try to simplify. When things feel unsettled, your life and activities may need to resettle a bit to adapt and adjust. There is help and support to stay calm amid chaos.

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.

#RealT1DLyfe Sara’s Story: Type 1 Diabetes, Food and Eating Disorders

Being diagnosed with Type 1 diabetes is far from the best news I’ve ever received. However, I had the best support from family, friends and healthcare professionals. Thanks to this support system from day one, I felt confident that I could maintain a positive mindset, even though I knew there would be many tough periods ahead.

I have always tried to look and act “perfect” on the outside by not making a fool of myself and not creating unnecessary conflicts so that I would be accepted and respected. All of these behaviors striving for “perfection” have in some way affected the history of my T1D.

For better or worse, I have always placed significant value on my appearance. I have always strived for something that is ultimately superficial and should not really matter in the scheme of things. The combined stress of how I saw myself in the mirror and my perfect blood sugar curves eventually turned into a minor disaster.

Sara Moback thin

I learned quite quickly when I was diagnosed with T1D how food affected my blood sugar. I learned how many units of insulin I needed to maintain a relatively stable blood sugar. Together, the time and effort I dedicated towards food while I began to think more about how my body looked, as well as other important happenings in my private life, led to an awful disease – anorexia nervosa in 2016. This part of my life was probably the worst. I do not really know where my strength came from, but I eventually managed to contact a clinic that helped me, and this was the beginning of a journey to a healthier life.

I made significant progress once I started working with my body instead of against it. Before, the nutrition of what I was eating was not important to me. The most important thing at that time was for any food I consumed to not affect my blood sugar.  Now, I realize how much of an impact my T1D had on the way I considered food and my overall diet.

Receiving a diagnosis of Type 1 diabetes was traumatic because it meant I couldn’t live life as I knew it. It is difficult to change habits and ways of life – even the small, everyday habits. The additional diagnosis of anorexia made this even more difficult. After a long time spent in treatment, I had overcome most of the difficulties I encountered with my disease. I had a tough time when it came to relationships, jobs and figuring out what life meant to me.

Today, I have come a long way in my recovery. However, food is an integral part of my life and I will never be able to get rid of the thoughts of what my next meal will look like. It is a feeling that a person with T1D can never truly get rid of. Some days I feel strong because I do not struggle with my thoughts surrounding food and T1D at all. While other days, I feel the heavy burden of T1D, although I don’t always show it.

If people around us knew the extend of how hard we work to keep our bodies and souls alive, they would be shocked. Although many still do not and most likely will never fully understand, the most important thing is that you are aware of the choices that make you feel good.

Sara Moback full length

 

Helsinn and Lyfebulb Announce Call for Applications for Third Annual Patient-Driven Innovation Summit & Award in Oncology

Annual Patient-Driven Innovation Summit & Award in Oncology
The Award recognizes Patient Entrepreneurs demonstrating outstanding innovations which advance solutions in the prevention, management or care of cancer

Lyfebulb-Helsinn Award 2020

MONACO, PRINCIPALITY OF MONACO, AND NEW YORK, NY, USA, September 17th, 2019: Helsinn, a Swiss pharmaceutical group focused on building quality cancer care, and Lyfebulb, a patient empowerment platform that connects patients with industry to support user-driven innovation toward solutions in chronic disease, announced the opening of applications for their third annual Innovation Summit in Cancer. Candidates are invited to submit applications at Lyfebulb-Helsinn 2020 Challenge page, where more information regarding eligibility criteria is available. Submissions may be made until November 17th, 2019.

The Summit is open to Patient Entrepreneurs building groundbreaking companies to advance the prevention, diagnosis, management or care of cancer. Patient Entrepreneurs include cancer patients, cancer survivors, or those having a close relative or loved one with cancer. Applicants for the competition must have established a company with impactful solutions to better manage and improve the quality of life of cancer patients with respect, integrity, and quality.

“While cancer is a broad-reaching disease, the impact of it is felt very personally by each patient and his or her family,” said Karin Hehenberger, MD, PhD, Founder and CEO of Lyfebulb. “We look forward to seeing the latest innovators who have been personally impacted by this disease and turned this experience and the insights gained into much needed solutions for our community.”

The 2020 Lyfebulb-Helsinn Summit will be held at the Grimaldi Forum in Monaco on January 29th and 30th, 2020, culminating in the announcement of the winner of the 2020 Lyfebulb-Helsinn Award of $25,000 on January 30th, during the 14th Monaco Biennale of Oncology. An additional $25,000 Squinto-LePera Award in Oncology will also be awarded at that time.

About the Helsinn Group
Helsinn is a privately-owned pharmaceutical group with an extensive portfolio of marketed cancer care products and a robust drug development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality. The Group works across pharmaceuticals, biotechnology, medical devices and nutritional supplements and has expertise in research, development, manufacture and the commercialization of therapeutic and supportive care products for cancer, pain and inflammation and gastroenterology. In 2016, Helsinn created the Helsinn Investment Fund to support early-stage investment opportunities in areas of unmet patient need. The company is headquartered in Lugano, Switzerland, with operating subsidiaries in Switzerland, Ireland, the U.S., Monaco and China, as well as a product presence in approximately 190 countries globally.
To learn more about Helsinn Group please visit www.helsinn.com

About Helsinn Investment Fund S.A., SICAR
The Helsinn Investment Fund is focused on investments in areas of high unmet patient need. Backed by the Helsinn Group, and guided by Helsinn’s core values of quality, integrity and respect, Helsinn Investment Fund aims to help companies with innovative technologies to transform new ideas into commercial solutions with the potential to impact health-related quality of life of patients.
Drawing on Helsinn’s over 40 years of investment into research and development and commercial expertise, the investment fund selects companies with technologies in a range of areas including cancer therapeutics and diagnostics, cancer supportive care, metabolic and gastrointestinal disorders, and dermatology conditions. For more information, visit www.helsinninvestmentfund.com

About Helsinn International Services sarl
Helsinn International Services sarl is the Helsinn subsidiary which provides a range of advisory services and strategic activities to the Group and its specific companies. In particular, it acts as the advisory company to Helsinn Investment Fund.

About Lyfebulb
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry to support user-driven innovation. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, mental illness and migraine.
See www.lyfebulb.com, Facebook, Twitter, Instagram, Lyfebulb LinkedIn, and Karin Hehenberger LinkedIn.

For more information:
Helsinn Group Media Contact
Paola Bonvicini
Group Head of Communication
Lugano, Switzerland
Tel: +41 (0) 91 985 21 21
Info-hhc@helsinn.com
For more information, please visit www.helsinn.com and follow us on Twitter, LinkedIn and Vimeo.

Lyfebulb Media Contact:
Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1 917-575-0210
Email: karin@lyfebulb.com

Inside the Patient Entrepreneur’s Mind: Jon Margalit

Jon Margalit

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

Jon Margalit is CEO & Founder of Complete Start. 

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

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

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

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

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

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

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

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

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

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

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

On Letting Go + Self Acceptance While Living With Multiple Sclerosis

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

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

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

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

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

I wanted to be like everyone else.

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

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

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

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

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

CUT TO:

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

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

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

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

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

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

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

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

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

Originally posted on Medium.

Helsinn and Lyfebulb Announce Third Annual Patient-Driven Innovation Summit & Award in Oncology to be held during the 14th Monaco Biennale of Oncology 2020

The Award recognizes Patient Entrepreneurs demonstrating outstanding innovations which advance solutions in the prevention, management or care of cancer

Lyfebulb-Helsinn Award 2020

MONACO, PRINCIPALITY OF MONACO, AND NEW YORK, NY, USA, August 29th, 2019: Helsinn, a Swiss pharmaceutical group focused on building quality cancer care, announced that it will partner with Lyfebulb, a patient-empowerment platform that connects patients with industry to support user-driven innovation, to host their third annual Innovation Summit and Award in Oncology.

The Lyfebulb-Helsinn Innovation Summit will be held at the Grimaldi Forum in Monaco on January 29th and 30th, 2020, culminating in the announcement of the 2020 Award winner on January 30th, during the 14th Monaco Biennale of Oncology.

The Summit is open to Patient Entrepreneurs building groundbreaking companies to advance the prevention, diagnosis, management or care of cancer. Patient Entrepreneurs include cancer patients, cancer survivors, or those having a close relative or loved one with cancer.

All candidates are invited to submit applications through the Lyfebulb-Helsinn Innovation Summit & Award website, where more information regarding eligibility and key criteria is available. Submissions may be made between September 16th and November 17th, 2019.

Riccardo Braglia, Helsinn Group Vice Chairman and CEO, commented: “Cancer patients and their real life experience are at the heart of what the Helsinn Group does. We are strongly committed to supporting inspired Patient Entrepreneurs who have a unique insight into products and solutions which can bring respect and integrity to the patient community and quality solutions to the challenges they face.”

“We are thrilled to be partnering with Helsinn again to help accelerate solutions that patients have identified as much needed into the marketplace,” said Dr Karin Hehenberger, CEO and Founder of Lyfebulb. “Getting this group of select Patient Entrepreneurs together not only increases their exposure, but also fosters a unique collaboration between innovators with a shared mission of serving patients’ unmet needs.”

About the Helsinn Group

Helsinn is a privately-owned pharmaceutical group with an extensive portfolio of marketed cancer care products and a robust drug development pipeline. Since 1976, Helsinn has been improving the everyday lives of patients, guided by core family values of respect, integrity and quality. The Group works across pharmaceuticals, biotechnology, medical devices and nutritional supplements and has expertise in research, development, manufacture and the commercialization of therapeutic and supportive care products for cancer, pain and inflammation and gastroenterology. In 2016, Helsinn created the Helsinn Investment Fund to support early-stage investment opportunities in areas of unmet patient need. The company is headquartered in Lugano, Switzerland, with operating subsidiaries in Switzerland, Ireland, the U.S., Monaco and China, as well as a product presence in approximately 190 countries globally.

To learn more about Helsinn Group please visit www.helsinn.com

About Helsinn Investment Fund S.A., SICAR

The Helsinn Investment Fund is focused on investments in areas of high unmet patient need. Backed by the Helsinn Group, and guided by Helsinn’s core values of quality, integrity and respect, Helsinn Investment Fund aims to help companies with innovative technologies to transform new ideas into commercial solutions with the potential to impact health-related quality of life of patients.

Drawing on Helsinn’s over 40 years of investment into research and development and commercial expertise, the investment fund selects companies with technologies in a range of areas including cancer therapeutics and diagnostics, cancer supportive care, metabolic and gastrointestinal disorders, and dermatology conditions.

For more information, visit www.helsinninvestmentfund.com

About Helsinn International Services sarl

Helsinn International Services sarl is the Helsinn subsidiary which provides a range of advisory services and strategic activities to the Group and its specific companies. In particular, it acts as the advisory company to Helsinn Investment Fund.

About Lyfebulb

Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry to support user-driven innovation. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, mental illness and migraine.

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

For more information:

Helsinn Group Media Contact
Paola Bonvicini
Group Head of Communication
Lugano, Switzerland
Tel: +41 (0) 91 985 21 21
Info-hhc@helsinn.com

For more information, please visit www.helsinn.com and follow us on Twitter, LinkedIn and Vimeo.

Lyfebulb Media Contact:

Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1 917-575-0210
Email: karin@lyfebulb.com

Inside the Patient Entrepreneur’s Mind: John Wilcox

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

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

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

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

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

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

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

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

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

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

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

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

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

Lastly, what do you do for fun to manage the stress of running a business as both a person with t1d and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

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

 

 

SuperBetter Partners With Psych Hub To Provide Videos About Mental Health

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

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

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

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

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

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

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

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

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

Physical healing remains strong, with a few slight problems.

 

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

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

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

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

Mental health continues to ebb and flow.

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

Worrying about scans is a constant, too

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

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

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

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

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

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

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

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

 

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