Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day because it has enabled her to meet many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people diagnosed. Jessie is also determined to show what is possible and is determined to teach others how to successfully blog and create a brand around blogging.
Teresa is a Congenital Heart Disease survivor and has endured multiple open-heart surgeries and cardiac procedures. She was diagnosed with Multiple Sclerosis in November of 2014 and is under the care of an esteemed MS Specialist. Teresa knows there is a calling on her life and she fully embraces that. Teresa uses her illnesses as opportunities to further rely on her faith, walk in her truth, raise awareness and educate others. She believes that she is purposely on purpose and uses her life to empower and inspire others. Teresa aspires to be a light that shines in dark places. Teresa is a patient advocate, inspirational speaker, author, poet, and a community activist. Diversity, inclusion and health equity matter to Teresa and her advocacy efforts solidify her commitment to amplifying the patient voice, racial and social justice. She enjoys writing, reading, listening to music and spending time with her family and friends. Teresa acknowledges her supportive and loving husband who is beside her through every trial and triumph and the unwavering love of her wonderful parents throughout her life.
Diagnosed with multiple sclerosis in 2012, Diana spent the first seven years running. Where to? She had no idea as long as MS wasn’t around. But as we all know, you can run but you can’t hide. No matter what Diana tried to do, MS would rear its ugly head to remind her who was boss. You would think she would get the hint and make room for MS, but NO! Diana would do things her way. Until one day, seven tedious years later, she finally woke up and realized she could never outrun MS.
And that has made all the difference. For one, her cat Nosey stopped biting her. For two, she was no longer ashamed of her story. Empowered, Diana started blogging about her experience with MS and depression on Instagram. Her passion is helping others have a more peaceful journey with MS.
Diana lives in Brooklyn, NY with her husband, 14-month-old daughter, and two fur babies Ninja and Nosey. In her former life, she worked as a writer and digital media-marketing specialist.
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 announced that Kinza Kasher of Leoplus USA was chosen as the winner of the Lyfebulb 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 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 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.”
For additional information on the Innovation Challenge and the full list of finalists, please visit https://lyfebulb.com/innovation-challenges/.
About Multiple Sclerosis
Multiple sclerosis (MS) is a chronic, often debilitating disease that affects approximately 2.5 million people worldwide. In MS, an abnormal response of the body’s immune system causes inflammation and damage to myelin—the substance covering nerve fibers—in addition to damage to nerves themselves. Signs and symptoms are varied and can pose significant challenges in daily life.
About Lyfebulb
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry (manufacturers and payers) to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis, and depression/anxiety.
See www.lyfebulb.com, Facebook, Twitter, Instagram, Karin Hehenberger LinkedIn, and Lyfebulb LinkedIn.
For inquiries, please contact:
Lyfebulb:
Karin Hehenberger
CEO and Founder
917-575-0210
SOURCE Lyfebulb
Related Links
www.lyfebulb.com
CHALLENGE TIMELINE
June 12, 2019
Introductory meetings and activities
June 13, 2019
Interactive workshop
June 13, 2019
Finalists presentations
June 13, 2019
Judges deliberation
June 13, 2019
Networking reception
June 13, 2019
Awards ceremony
Leoplus USA
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.
The Challenge took place in Summit, New Jersey where a panel of judges, including healthcare professionals, patients and patient advocates, business leaders and industry experts, awarded a $25,000 monetary grant to the most innovative, impactful business addressing an unmet need in MS.
Beyond presenting their innovative ventures to this group for a monetary grant, the finalists had the opportunity to exchange ideas on how to further advance patient innovation in the MS community; engage with Lyfebulb founders, representatives from the patient community, key opinion leaders and potential investors; and share insights with each other.
The Lyfebulb 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).
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.
Jason DaSilva
Founder and President
Kinza Kasher
User Experience Researcher & Product Designer at Leoplus USA
Amy Li
Founder and CEO at Dance4Healing
Tim Coetzee, PhD
Chief advocacy, Services and Research officer at national multiple sclerosis society
Adam Fine
General partner and CEO at windham venture partners
Deneen Vojta, M.D.
Executive Vice President at Global Research & Development of UnitedHealth Group
Innovation challenges continue to proliferate in the pharma industry, and the latest is seeking crowdsourced solutions for multiple sclerosis (MS) patients. This event from Lyfebulb is unique, however, in that it only accepted entries from patients or direct relations of patients.
In the MS challenge, Lyfebulb has 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.
This 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.”
Tuesday, May 21, 2019
Source: Beth Snyder Bulik, FiercePharma
