When Elizabeth was diagnosed with Relapsing MS in 2002, her work was on the inside-front pages of top fashion magazines. Elizabeth was Estée Lauderʼs global advertising, Art Director. In 2006, she was recruited by Starwood Hotels & Resorts where as Creative Director, she traveled the world, directing lifestyle- photo shoots. Falling in love with the hospitality industry, Elizabeth advanced to Morgans Hotel Group, ultimately in 2015, landed her swan song, position, directing the advertising, that re-launched New York Cityʼs legendary, Knickerbocker Hotel.
Today, MS symptoms have changed Elizabethʼs abilities to do some of the things she loves but her artistic vision and creative curiosity have only transitioned in new directions – two decades after Elizabethʼs first MS symptom she is learning to horse back ride through equine therapy, swimming laps at the YMCA, writing and illustrating a childrenʼs book, tracing her Swedish/French ancestry, blogging about cooking recipes, collected abroad and developing marketing for non-profits.
Rania was diagnosed with MS at 19 while in her first year of University. In the first years of being diagnosed and navigating her new way of life she did not speak much about her struggles. 2 years ago she decided to blog about her experience and since hasn’t been able to stop spreading awareness for this invisible disease. She started her blog as miss anonyMS, became and MS Ambassador for MS Limited in Australia and runs her own charity events with all proceeds going to finding a cure for MS as well as support services to help people living with MS.
In 2015 she was diagnosed with Multiple Sclerosis. While the diagnosis was hard the answers were a source of relief. Ann Marie uses her diagnosis to show others living with an invisible illness that you can celebrate the small stuff while living with a chronic illness.
Stupid Dumb Breast Cancer is Ann Marie Giannino-Otis’ fierce and unconventional initiative to promote awareness, early detection, and advocacy, with a special focus on how the disease impacts younger people. On behalf of her organization, Ann Marie has been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception in 2012, Stupid Dumb Breast Cancer has raised and contributed over $750,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, CancerConnects, Personal P.Ink and the Maureen’s Hope Foundation.
Ann Marie communicates regularly with a growing network of patients, their loved ones, and supporters via a variety of social media, where she candidly shares her thoughts and experiences and welcomes others to join the conversation, discover their own strengths, and discuss their journeys. The advocacy extends from breast cancer to MS and mental health.
I was diagnosed with relapsing MS in 2008, aged 28. I also live with polycystic ovarian syndrome and chronic urticaria/angiodema. I have experience in a broad caregiver’s capacity for my younger sister who has ulcerative colitis and who has also experienced mental health issues including PTSD, anxiety and depression. I work full time as a Spanish-English translator/analyst for a business intelligence company. In my spare time I work with multiple stakeholders (including pharma, patient associations/charities, clinicians, patients and the healthcare industry) to bring the patient voice into the healthcare journey, addressing issues that affect specific patient communities and cross-patient communities, as well as the healthcare industry.
Winner selected for potential of innovation to impact people with multiple sclerosis (MS) and their care partners
NEW YORK, June 14, 2019 /PRNewswire/ — Lyfebulb, a chronic disease-focused, patient-empowerment platform that connects patients with industry to support user-driven innovation, and Celgene Corporation (NASDAQ: CELG) announced that Kinza Kasher of Leoplus USA was chosen as the winner of the Lyfebulb-Celgene 2019 “Addressing Unmet Needs in MS: An Innovation Challenge.”
Leoplus USA is developing Duet, a device and app which aims to support communications between people with MS and their care partners to help improve patients’ disease management outcomes.
“We know communication within families affected by multiple sclerosis can be challenging. Duet is an innovative way to create connections with those you love,” said Tim Coetzee, Ph.D., Chief Advocacy, Services and Research Officer at the National Multiple Sclerosis Society, who served as chair of the judging panel. “We were particularly inspired by Kinza’s love for her mother, which then inspired this unique approach to fostering meaningful conversations and connections.”
An honorable mention was given to Jason DaSilva, the creator of AXS Map, a web platform that allows users to locate, rate and review the accessibility of any location in the world to help MS patients and their care partners facilitate travel.
Ten innovative finalists whose companies are helping to develop potential solutions to address an unmet need in MS were invited to compete at the MS Innovation summit hosted by Lyfebulb and Celgene at Celgene headquarters in New Jersey on June 13. The competition was only open to patient entrepreneurs – those who have been affected by MS as either a patient, loved one or support partner. A diverse panel of judges, which included experts in the MS, healthcare and business communities, selected Kinza as the winner of a $25,000 monetary grant to further develop her proposed potential solution.
“We congratulate each of our patient entrepreneur finalists and Celgene for helping us shine the spotlight on both the issues confronting people affected by multiple sclerosis and the innovative solutions that patient entrepreneurs are developing,” Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “Additionally, it is highly inspirational to spend two days with such passionate thought leaders in the multiple sclerosis community, from the entrepreneurs to the judges to our host, with stimulating, thought-provoking dialogue around the disease.”
“We are proud to be supporting exceptional patient entrepreneurs who are bringing innovation and personal experience to develop potential solutions to help address challenges of those with multiple sclerosis,” said Terrie Curran, President, Celgene Inflammation and Immunology. “Our team and the esteemed panel of judges, who are leaders in the community themselves, were impressed with the quality and thoughtfulness of the 10 innovations presented. We want to congratulate Kinza as being selected the winner of the Lyfebulb-Celgene 2019 Innovation Challenge and are excited to provide this award to support her ongoing work in the space.”
Multiple sclerosis (MS) is a chronic, often debilitating disease that affects approximately 2.5 million people worldwide. In MS, an abnormal response of the body’s immune system causes inflammation and damage to myelin—the substance covering nerve fibers—in addition to damage to nerves themselves. Signs and symptoms are varied and can pose significant challenges in daily life.
About Lyfebulb
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry (manufacturers and payers) to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, and depression/anxiety.
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next‐generation solutions in protein homeostasis, immuno‐oncology, epigenetics, immunology and neuro‐inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.
For inquiries, please contact:
Lyfebulb: Karin Hehenberger CEO and Founder 917-575-0210
Kinza is a researcher, interaction designer and strategist based in New York. While working on projects centering user experience and digital products, it is the “how” and “why” of the problems that drive her creative thought process. She starts at the purpose of every interaction she is exploring which inspires her to keep finding challenges that people face in their day-to-day lives, in hopes of solving them through critical thinking, user research and human-centered design.
Kinza Kasher
User Experience Researcher & Product Designer at Leoplus USA
ABOUT THE SUMMIT AND AWARD
The Innovation Challenge will take place in June 2019 and will be open to Patient Entrepreneurs—those who have been affected by multiple sclerosis (MS) as either a patient, loved one or support partner—whose companies are helping develop solutions to address an unmet need in MS. The goal of the initiative is to seek new solutions, beyond therapy, to help address either challenges faced by people with MS in their daily lives or an unmet need that could potentially improve outcomes and experiences for both people with the disease and their support partners.
Celgene will host Addressing Unmet Needs in MS: An Innovation Challenge, in Summit, New Jersey for the Challenge finalists, where a panel of judges, including healthcare professionals, patients and patient advocates, business leaders and industry experts, will award a $25,000 monetary grant to the most innovative, impactful business addressing an unmet need in MS.
Finalists will receive an invitation to Celgene headquarters to pitch their solutions.
Beyond presenting their innovative ventures to this group for a monetary grant, the finalists will also have the opportunity to exchange ideas on how to further advance patient innovation in the MS community; engage with Lyfebulb founders, Celgene leadership, representatives from the patient community, key opinion leaders and potential investors; and share insights with each other.
The Lyfebulb–Celgene Innovation Challenge stems from the idea of the Lyfebulb Entrepreneur Circle, established in 2015, and features individuals who have created a product and a company based on issues encountered due to their personal experiences with a chronic illness (through their own diagnosis or that of a loved one).
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Honorable Mention
AXS LAB INC.
Jason DaSilva is a director, producer, writer and disability rights activist best known for the Emmy Award winning documentary, When I Walk, the first film in a documentary trilogy. The documentary follows his diagnosis of primary progressive multiple sclerosis for seven years as he progresses from cane, to walker, to wheelchair. Following the success of When I Walk, Jason released the second film in the trilogy, When We Walk. When We Walk follows his life as he deals with his MS and fights to stay close with his son. The film is based on his New York Times Op-Ed article, Mapping the Disability Trap. In 2019, the film premiered at the Hot Docs Film Festival, won best documentary at the Center for Asian American Media’s CAAMFest, and had its New York debut at the Human Rights Watch Film Festival. The final film, When They Walk, is currently in production. Jason DaSilva is also the President and Founder of AXS Lab, a nonprofit organization dedicated to giving a voice to people with disabilities through film, media and technology. As the President of AXS Lab, Jason is the key creative and strategic voice of the organization, providing insight to necessities in disability activism and facilitating AXS Lab’s work with the United Nations and partner organizations around the world. AXS Map, a crowd sourced Google map based platform which rates the accessibility of businesses, is the primary technology branch of AXS Lab, the largest online database in North America for accessibility. In 2015, Jason had the opportunity to share his AXS Map on a disability panel at the White House. AXS Map serves as an active tool for change alongside his films. AXS Lab contributed to the United Nation’s Flagship Report on Disability and Development which was published in 2018. In 2014, Jason won three awards: the American Association of Persons with Disabilities (AAPD) Paul G. Hearn Leadership Award, the New Mobility Magazine: Person of the Year Award, and the Christopher Award for Excellence in Film. In 2019 he was awarded the Top 40 Trailblazers Award from the Community Resource Exchange, an award for leaders who are driving meaningful change in their communities and the larger world, and the Made in New York recognition at the Gotham Awards.
Executive Vice President at Global Research & Development of UnitedHealth Group
Driving Change
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients, Industry (manufacturers and payers) and investors to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, IBD, and multiple sclerosis.
Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next‐generation solutions in protein homeostasis, immuno‐oncology, epigenetics, immunology and neuro‐inflammation.
Innovation challenges continue to proliferate in the pharma industry, and Celgene’s is the latest, seeking crowdsourced solutions for multiple sclerosis (MS) patients. Its partnership with Lyfebulb is unique, however, in that it only accepted entries from patients or direct relations of patients.
In the MS challenge with Celgene, Lyfebulb and its Big Biotech partner have narrowed the field to 10 patient entrepreneur finalists, with a “Shark Tank”-style finish set for June 12-13. Each finalist will get 10 minutes to present to a professional panel of judges that will include a patient advocacy group lead, patient ambassador and venture capitalist, plus reps from pharma and the insurance industry. At the end of the second day, one winner will be chosen for the top prize of $25,000. But even more valuable than the money, said Lyfebulb founder and CEO Karin Hehenberger, is the exposure to pharma executives, additional funding sources and other influential industry players.
Celgene first approached Lyfebulb last year in an effort to better understand MS patient needs as it readied its first multiple sclerosis treatment for market. Since then, the FDA has pushed back on Celgene’s candidate ozanimod with a refuse-to-file notice and a request more data on preclinical and clinical pharmacology, delaying the company’s NDA filing until March of this year. The new ozanimod data hit its targets, though, and analysts project the drug could still reach $2 billion in sales in the already competitive oral MS drug market. In the meantime, Celgene has also become an M&A partner for Bristol-Myers Squibb in a $74 billion deal approved by shareholders in April.
The Celgene challenge for multiple sclerosis is Lyfebulb’s seventh patient-sourced contest, with previous partners including Novo Nordisk for diabetes, Helsinn Healthcare for oncology and United Healthcare for depression and anxiety solutions.
Hehenberger, a physician and Type 1 diabetes patient who has walked the walk of chronic disease with two transplants and a pacemaker implant, launched the company in 2014 to help give patients a voice in industry solutions.
“We believe insights and solutions from patients can be leveraged by pharma and by tech and device companies to enhance their pipelines, to get closer to patients and to learn what it’s like to live with these diseases,” she said. “For the patients, they finally really get heard. For pharma companies, instead of just being patient-centric, they now work side by side with patients.”
Lyfebulb and Celgene Announce Finalists for 2019 “Addressing Unmet Needs in MS: An Innovation Challenge”
Finalist patient entrepreneurs recognized for potential of innovations in multiple sclerosis (MS)
NEW YORK, May 10, 2019 /PRNewswire/ Lyfebulb, a chronic disease-focused, patient-empowerment platform that connects patients with industry to support user-driven innovation, and Celgene Corporation (NASDAQ: CELG) announced the 10 finalists chosen for the Lyfebulb-Celgene 2019 “Addressing Unmet Needs in MS: An Innovation Challenge.”
The following finalists will compete at the Innovation Challenge Summit on June 13, 2019, for a $25,000 monetary grant to further develop their proposed innovations:
Abilitech Medical, Shawna Persaud: Medical device intended to help people with MS with mobility challenges use their arms
AXS Map, Jason DaSilva: Web platform that allows users to locate, rate and review the accessibility of any location in the world
BeCareLink, Alan Gilbert: Predictive artificial intelligence (AI) digital therapeutics platform which remotely measures clinically validated assessments of cognition and motion to help improve quality of care and reduce costs for people with MS
C. Light Technologies, Inc, Zachary Helft: Neurotech and AI technology using eye motion measured on the cellular scale to monitor disease state in people with MS for treatment efficacy feedback
Dance4Healing, Amy Li: AI-powered telehealth live video platform which brings community, exercise and physical rehabilitation into the home to encourage healthy behavior change
Icometrix, Wim Van Hecke: AI-based brain imaging solutions to monitor disease progression
Leoplus USA, Kinza Kasher: Device and app which aims to support communications between patients and care partners
Loro co., David Hojah: Socially assistive companion robot for people with mobility challenges
Moodify, Kate Milliken: Web-based tool which builds communities, aims to reduce loneliness, creates searchable content moments and tracks the emotional journey
ThermApparel LLC, Bradley Dunn: Lightweight, comfortable and concealable cooling apparel for people with extreme heat sensitivity
“At Lyfebulb, we build communities of patients with chronic disease around a message of inspiration and hope for the future. Each of these patient entrepreneurs is inspirational, as they have taken their frustrations of living with their disease – or observing it in a loved one – and are working to turn those insights into business solutions to help members of the MS community live their daily lives more comfortably,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb.
These finalists are being recognized as outstanding patient entrepreneurs – those who have been affected by MS as either a patient, loved one or support partner – whose companies are helping develop solutions to address an unmet need in MS. A “pitch session” will be held at the Challenge Summit, and a winner will be chosen by a diverse group of experts in the MS, healthcare and business communities. The panel of judges will include:
Tim Coetzee, PhD: Chief Advocacy, Services and Research Officer, National Multiple Sclerosis Society;
Adam Fine: General Partner and CEO, Windham Venture Partners;
Elizabeth Jones: MS Patient Ambassador;
Darin T. Okuda, MD, MS, FAAN, FANA: Director, Neuroinnovation Program, Multiple Sclerosis & Neuroimmunology Imaging Program, UT Southwestern Medical Center; and
Deneen Vojta, MD: Executive Vice President, Global Research & Development, UnitedHealth Group.
“We are excited to bring together these patient entrepreneurs, judges and members of the Celgene and Lyfebulb teams for an engaging and interactive summit,” said Terrie Curran, President, Celgene Inflammation and Immunology. “Ultimately, we hope to foster discussion about ways to advance innovation in the space and look forward to awarding this grant that will help support people with MS and their families.”
About Multiple Sclerosis Multiple sclerosis (MS) is a chronic, often debilitating disease that affects approximately 2.5 million people worldwide. In MS, an abnormal response of the body’s immune system causes inflammation and damage to myelin—the substance covering nerve fibers—in addition to damage to nerves themselves. Signs and symptoms are varied and can pose significant challenges in daily life.
About Lyfebulb Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry (manufacturers and payers) to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, and depression/anxiety.
About Celgene Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next-generation solutions in protein homeostasis, immuno-oncology, epigenetics, immunology and neuro-inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.
For inquiries, please contact:
Lyfebulb Karin Hehenberger, M.D., Ph.D., CEO 917-575-0210;
The Innovation Challenge will take place in June 2019 and will be open to Patient Entrepreneurs—those who have been affected by multiple sclerosis (MS) as either a patient, loved one or support partner—whose companies are helping develop solutions to address an unmet need in MS.
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NEW YORK, Nov. 14, 2018 /PRNewswire/ — Lyfebulb, a chronic disease-focused, patient-empowerment platform that connects patients with industry and investors to support user-driven innovation, announced it is joining forces with Celgene (NASDAQ: CELG) to launch Addressing Unmet Needs in MS: An Innovation Challenge, to seek new solutions aimed at addressing the daily challenges associated with multiple sclerosis (MS).
The Innovation Challenge will take place in May 2019 and will be open to patient entrepreneurs—those who have been affected by MS as either a patient, loved one or support partner—whose companies are helping develop solutions to address an unmet need in multiple sclerosis. The goal of the innovation challenge is to shed light on the endeavors and ideas of patient entrepreneurs while raising awareness about this chronic condition. Official rules and eligibility criteria will be announced by Lyfebulb and Celgene in early 2019. Celgene will host an Addressing Unmet Needs in MS: An Innovation Challenge event, in Summit, New Jersey for the challenge finalists, where a panel of judges, including healthcare professionals, business leaders and industry experts, will award a cash prize to the patient entrepreneurs with the most innovative, impactful solutions.
“People living with multiple sclerosis and their caregivers possess a deep understanding of the everyday challenges of living with a chronic disease, giving them unique insight into creative, achievable solutions,” said Terrie Curran, President, Celgene Inflammation and Immunology. “By launching this innovation challenge with Lyfebulb, Celgene aims to reinforce the value of patient-centric innovation for multiple sclerosis by providing support to help progress the ideas of patient entrepreneurs.”
Multiple sclerosis is a chronic, often debilitating disease that affects approximately 2.5 million people around the world. In MS, an abnormal response of the body’s immune system causes inflammation and damage to myelin—the substance the covers nerve fibers—as well as damage to nerves themselves. Signs and symptoms are varied and can pose significant challenges in daily life.
“As part of our mission to reduce the burden of living with chronic diseases, we are thrilled to expand our focus into MS in conjunction with Celgene,” said Dr. Karin Hehenberger, CEO and Founder of Lyfebulb. “We look forward to engaging deeply with the MS community to better understand and elucidate their frustrations confronted in daily life. Importantly, we are eager to highlight those patient entrepreneurs whose solutions may really benefit the lives of the millions of MS patients.”
About Lyfebulb Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients, industry (manufacturers and payers), and investors to support user-driven innovation and reduce the burden of chronic disease. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, and now multiple sclerosis.
About Celgene Celgene Corporation, headquartered in Summit, New Jersey, is an integrated global pharmaceutical company engaged primarily in the discovery, development and commercialization of innovative therapies for the treatment of cancer and inflammatory diseases through next‐generation solutions in protein homeostasis, immuno‐oncology, epigenetics, immunology and neuro‐inflammation. For more information, please visit www.celgene.com. Follow Celgene on Social Media: @Celgene, Pinterest, LinkedIn, Facebook and YouTube.
For inquiries, please contact:
Lyfebulb: Karin Hehenberger, 917-575-0210 CEO and Founder
