tsychay, Author at Lyfebulb

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.

how to deal with chronic pain

When you’re suffering from chronic pain, chances are you’ll go to great lengths to relieve the pain. However, there are lots of small, natural steps you can take that can help you manage your pain.

Each of these methods might make a small difference to your pain, but when you add them all up, they can make a significant difference in your life.

Here are five natural ways to help deal with your chronic pain.

Monitor Your Diet

How we fuel our body has a big impact on how we feel. If you’re not eating a well-balanced diet, this might exacerbate some of the pain you experience on a daily basis.

If you can ensure you’re eating a healthier diet, while also cutting out things like excessive alcohol consumption and smoking, it can greatly improve your health and help you manage your pain.

Exercise Within Your Limits

how to exercise with chronic illness

One of the problems with chronic pain is that it can make it uncomfortable to exercise, which means you miss out on doing one of the best pain-relieving activities there is.

When we exercise, it stimulates the production of endorphins, which block pain signals and make us feel better. For this reason, it can be helpful to push yourself to do light exercises that get the blood pumping and help strengthen your muscles.

By strengthening important muscles, you also protect against other ailments further down the line.

Get Professional Help

Dealing with chronic pain can make doing simple day-to-day tasks that much more difficult. If you find that you’re struggling to deal with everyday responsibilities, there are professional services out there to help you.

Chronic care management companies like Chartspan can help you manage your health by supporting you to achieve your care goals. This could be through 24/7 telephone access to a nurse, help picking up prescriptions, transportation to and from medical appointments, and many other things.

You don’t have to struggle on alone: there is professional help out there.

Join a Group for People Who Suffer from Chronic Pain

Chronic pain doesn’t just affect you physically; it also has a profound effect on your mental health. The mental challenges of having to live in constant pain can start to add up, so sometimes it’s nice to speak to other people who are suffering in the same way that you are.

Talking with other people who understand what you are going through can be a huge help and really relieve some of the mental anxiety that’s associated with chronic pain.

Massage

Massage is a great way of relieving stress and stimulating pain-fighting endorphins. When muscles become tight, the contraction can cause serious pain, and massage is a way of relaxing those muscles and releasing all that tension.

It’s amazing the effect stress can have on your pain, and you might not even realize you’re suffering from it until you do something like a massage, where you can let all that tension go.

This morning, as I woke up to a grey sky with rain hanging in the air, just waiting to fall, I felt down. I am often affected by weather, the long winters in Sweden were definitely not good for me, darkness scares me and makes me feel cold and vulnerable.

In addition, today I was also facing another day without my office colleagues who, besides my intimate family of my husband and little daughter, are my most frequent contacts!

It is a fact that the majority of us spend most of our time working and sleeping. The rest of the time is usually divided between home, work, childcare, exercise and social events (including eating). For those with chronic disease, we also have to add doctor visits, pharmacy visits or mail order managements, and maintaining a healthy lifestyle into our daily routines.

I consider myself one of the lucky ones because I love my work, my team and our NYC office. I happen to live a block away, so my commute is easy and safe enough during this pandemic that I can still walk to work daily and maintain some semblance of normalcy.

However, this week I have been alone, and this will continue for a while. Virtual meetings are a great solution, don’t get me wrong, and perhaps we will actually accomplish almost as much as with in-person alternatives. Albeit, I will miss the times between meetings, including the brief exchanges while getting coffee, the hellos and goodbyes and the impromptu discussions about business and daily life. Even the feeling of being together in the important work that we do does not come across as well when all sitting in various places.

I do make a concerted effort to engage on social media, per phone, by email and text, and they are all great ways to mitigate the effects of isolation! Social media truly helps me to feel connected and not so alone. In some cases, I can actually share more easily this way. It is easier to open up when you do not need to show your face, can be more anonymous, and also to be blunt and direct with your feelings, which can sometimes get you in trouble. I always try to remind myself that there are real people out there behind the tags, addresses and numbers. Real people do not react with emojis, but instead with laughter, tears and anger. There is a huge role for digital when searching for facts and connecting for a purpose, but beyond this, it does not address everything we need.

I may be old-fashioned, but I believe human beings crave human contact. Although I am living in one of the most vibrant cities in the world, these times make me feel more alone and craving human contact more than ever.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Lyfebulb and Helsinn Announce the Winners of the Third Annual Lyfebulb-Helsinn Cancer Innovation Summit & Award

MONACO, PRINCIPALITY OF MONACO, AND NEW YORK, NY, USA, January 31, 2020: Lyfebulb, a patient empowerment platform that connects patients with industry to support user-driven innovation toward solutions in chronic disease, and Helsinn, a Swiss pharmaceutical group focused on building quality cancer care, announce that Russell LaMontagne of Boston Immune Technologies and Therapeutics was chosen as the winner of the Lyfebulb-Helsinn Innovation Award, and Cesare Spadoni, PhD, of Oncoheroes Biosciences was chosen as the winner of the Squinto-LePera Award by Lyfebulb. In addition, the jury decided to award Michael Stein, PhD, of Valo Therapeutics a third grant. The Awards recognize outstanding Patient Entrepreneurs building groundbreaking companies to advance the prevention, diagnosis, management or care of cancer.

Boston Immune Technologies and Therapies is developing immune-based therapies for cancer to help patients by making treatments more efficacious, cost effective and time efficient. Oncoheroes Biosciences exclusively focuses on the discovery and development of better drugs to help children and adolescents with cancer. Valo Therapeutics is developing novel, patented therapeutic immunotherapy platforms to help cancer patients by uniquely addressing all four objectives key to successful cancer therapy.

Eleven finalists, all of whom represent companies founded by cancer patients, cancer survivors or those with loved ones affected by cancer, were invited to compete at the Lyfebulb-Helsinn Cancer Innovation Summit on January 30, 2020, at the Grimaldi Forum in Monaco during the 14th Monaco Biennale of Oncology. The Summit kicked off with a presentation by Dr. Giulio Draetta, Chief Scientific Officer of MD Anderson, that highlighted the new direction his organization is taking to drive innovation in cancer research. An independent panel of judges, which included diverse experts in the cancer, healthcare and business communities, listened to the pitches and selected Russell and Cesare as the winners of the two $25,000 monetary grants, and added Michael with a $5,000 grant, to further develop their potential solutions.

“The outstanding diversity and innovations of the 11 finalists attest to the growing reputation of the Challenge that we are running together with Helsinn for a third year in a row. Additionally, this year, during the Summit, we included an inspirational, moving presentation by a two-time cancer survivor, Kimberly Irvine. We saw firsthand that the combination of patients and care partners working alongside industry is an important key to success,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb.

Riccardo Braglia, Helsinn Group Vice Chairman and CEO, said, “The caliber of submissions for this year’s awards was extremely high and we would like to congratulate all those who made it to the Summit. We congratulate Russell, Cesare and Michael and would also like to extend our thanks to the expert panel of judges who had to choose between so many worthy finalists. These awards are testament to the many entrepreneurs out there who are using their own personal experiences to bring innovation and new solutions to the challenges of cancer. Helsinn is proud to support innovation of this quality and looks forward to supporting budding entrepreneurs in coming years.”

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 health, migraine and transplantation.

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

About the Helsinn Groups

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.

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

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

Lyfebulb and Helsinn Announce 11 Finalists for the Third Annual Lyfebulb-Helsinn Cancer Innovation Summit & Award

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

MONACO, PRINCIPALITY OF MONACO, AND NEW YORK, NY, USA, January 14, 2020: Lyfebulb, a patient empowerment platform that connects patients with industry to support user-driven innovation toward solutions in chronic disease, and Helsinn, a Swiss pharmaceutical group focused on building quality cancer care, announce the 11 Patient Entrepreneurs chosen as finalists for the Lyfebulb-Helsinn Cancer Innovation Summit & Award to be held on January 30, 2020. The following inspirational finalists represent companies that have been founded by cancer patients, cancer survivors or those with loved ones affected by cancer:

Alexander Börve, PhD of First Derm
Jakub Chudik of ConquerX
Russell LaMontagne of Boston Immune Technologies and Therapeutics
Robert Manning of CureMatch
Gilles Pagès, PhD of InfAngioPharma
Øystein Rekdal, PhD of Lytix Biopharma
Maya Said, ScD of Outcomes4Me
Niranjan Sardesai, PhD of Geneos Therapeutics
Cesare Spadoni, PhD of Oncoheroes Biosciences
Michael Stein, PhD of Valo Therapeutics
Valerie Vanhooren, PhD of ONA Therapeutics

The finalists will compete for a chance to win one of two $25,000 awards, which recognize outstanding Patient Entrepreneurs building groundbreaking companies to advance the prevention, diagnosis, management or care of cancer. The primary award is the Lyfebulb-Helsinn Cancer Innovation Award, and the additional award is the Squinto-LePera Award by Lyfebulb, generously donated by Dr. Stephen Squinto, Executive Partner at OrbiMed and Co-Founder of Alexion, and Denise LePera.

The pitch session will be held at the Summit where a jury of experts will select the ultimate winners. The expert jury include new and returning judges:

Carolyn R. “Bo” Aldigé, Founder and CEO at Prevent Cancer Foundation®
Kimberly Irvine, Patient Ambassador
Hans Mies, PhD, Partner, Value Chain Management at KPMG
Professor Patrick Rampal, MD, President at Scientific Center of Monaco
Dennis Urbaniak, Executive Vice President Digital Health at Orexo

“At Lyfebulb, we believe patients can be innovators. Each of these chosen Patient Entrepreneurs inspires our community, as they have recognized the burdens of living with their chronic disease – or caring for a loved one with a chronic disease – and have turned those insights into business solutions to help members of the community live their daily lives more fully. We applaud each and every Patient Entrepreneur who applied to our Challenge, and we look forward to the interactive, collaborative sessions we will spend with our teams, jury and finalists to reduce the burden of living with cancer,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb.

Riccardo Braglia, Helsinn Group Vice Chairman and CEO, said, “Patient-driven research and innovation has proven itself invaluable as it offers a unique understanding of what it means to live with a chronic illness. At Helsinn, we are delighted to continue to support this initiative, as improving the quality of life for those affected by cancer is a cause that remains a key focus for Helsinn. We look forward to meeting with each of the finalists during the summit and wish them all the best of luck.”

About Lyfebulb

About the Helsinn Group

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

About Helsinn Investment Fund S.A., SICAR

For more information, visit www.helsinninvestmentfund.com

About Helsinn International Services sarl

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

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.

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

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

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

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

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

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

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

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

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

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

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

Happy New Year AND New Decade!