I am a two time Heart Transplant recipient, two time synovial sarcoma cancer survivor and stroke survivor.
I developed dilated cardiomyopathy at the age of 9, was on the transplant list for only 9 hours and received my first heart transplant in 1990. I suffered severe rejection in 1995, my transplant team preformed plasmapheresis and that was able to reverse my rejection. I soon after developed gastroparesis from that rejection episode, which I continue to deal with on a daily basis.
In 2011, I received my second heart transplant 20+ years after my first. I had some complications coming out of surgery, aspirated, suffered a stroke and was put on ECMO. I spent 6 weeks in the hospital, along with some outpatient PT/OT but was able to make a full recovery and was back at work 4 months later.
In 2020, I developed synovial sarcoma lung cancer and underwent a lobectomy to remove the tumor & cancer. In May 2021 I had a reoccurrence of synovial sarcoma, this time on the scalp, and had the tumor remove and again am cancer free.
Professionally, I am a supply chain executive Fortune 500 company and I volunteer with various organizations dealing with chronic illness. Personally, I’m married to my beautiful wife and we have two sons. In my spare time I enjoy anything sports related, especially playing golf, and spending time with my family.
In 2003, after suffering with symptoms since the early 1990’s, I was diagnosed with Multiple Sclerosis. As a high school teacher, I educated my school community and raised awareness so much that my MS Walk team consisted of upwards of 400 walkers. In 2011 I learned that I had broken at least 1 vertebra (line due to a fall thanks to MS) and underwent spinal fusion and decompression surgery, and continued to educate my community. Sadly, I became unable to perform
My job anymore and became disability retired in 2014. As I struggled to regain my strength and walk again, I found my way to meditation as a coping mechanism for the extreme sadness I felt, and the depression that was all encompassing. As I began to regain some strength I also incorporated light yoga to keep my body moving and my brain mindful. At the end of 2016 (12/30 to be exact), I was diagnosed with breast cancer. Just like everything else in my life I put a smile on my face and did what I had to, and today I am more than 4 years cancer free. During it all I leaned on yoga and meditation because they are the best non-medicinal tools I know. I even became a yoga teacher so that I could share the benefits of the practice with others because I know first-hand how well it works. Just when I thought I had been given all that I could handle, I was then diagnosed with diabetes in 2018. While I certainly have had my share of obstacles, never once have I asked “why me?”. What I always say is “why not me?”, because I am no better or worse than anyone else and I clearly am swimming in a very shallow gene pool. One thing that has been constant for me is helping others, whether it has been advocating at doctor appointments, helping navigate the difficult waters to SSDI, teaching free yoga classes, or simply talking on the phone with those who need help. From where I stand, despite it all, life is incredibly sweet and I am grateful for every single day.
Allison Rosen, is a Houston, Texas native, and colorectal cancer survivor. She dedicates her life to use her voice and platform to educate, advocate, and continuously learn how best to represent the collective adolescent and young adult community and the colorectal cancer community. Allison is a Project Director at the University of Texas Health Science Center at Houston, focusing on colorectal prevention. She has a combined 15 years of experience in the oncology space, focusing on designing, implementing, and evaluating public health programs and initiatives, to address cancer awareness and disparities among the medically underserved. She serves as a patient, research and policy advocate working with Fight Colorectal Cancer, National Coalition for Cancer Survivorship, American Cancer Society-Cancer Action Network, Colorectal Cancer Alliance, Colon Cancer Coalition, SWOG Cancer Research Network, and volunteers and serves on numerous committees at MD Anderson Cancer Center. Through her own experience at beating Stage 2 colorectal cancer, she works to bridge the gap between the healthcare system and the communities that it serves. Allison loves to travel, nature, music, dancing, and will never say no to an adventure.
Daniel G. Garza has been a Patient Leader for about 20 years. He began his public speaking career after his AIDS diagnosis in September of 2000. He has lived Clean & Sober since June 21, 2007. After being diagnosed with Anal Cancer in May 2015, he had an Ostomy surgery in 2016, was diagnosed with Agoraphobia in 2017 and Diabetes in 2018. All of these events contributed to allowing those that hear his story and take a closer look at the long-term effects of HIV.
Daniel shares his story on social media, through several campaigns such as Positively Fearless, and volunteers for organizations such as Radiant Health Centers in Irvine California. He works with Wisdo as a Mentor, WEGO Health as a consultant and Global Healthy Living Organization as a member of the LGBT-COVID-19 Committee. Through his company Lilmesican Productions, Daniel and his partner, Christian, produce livestream content that is geared towards adding a positive message to their community.
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
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
Russell LaMontagne is the CEO of Boston Immune Technologies and Therapeutics, a biopharmaceutical company developing immune-based approaches for the treatment of cancer and infectious diseases. Russell has 20 years of experience in the health care industry, primarily focusing on consulting roles at biotechnology companies and non-profits from the University of Pennsylvania and the New England Journal of Medicine to VIRxSYS and Bristol-Myers Squibb. Over the past ten years, Russell has organized partnerships with Massachusetts General Hospital to promote clinical trials and new indications for the BCG vaccine. Prior to co-founding Boston Immune Technologies and Therapeutics, Russell served as president of Corinth Group, a boutique healthcare consultancy. Russell received his BS in Biology from the University of Massachusetts at Amherst and his MS from Yale University.
Dr. Maya Said is the founder and CEO of Outcomes4Me, a health technology company focused on providing patients diagnosed with cancer and other chronic diseases with personalized treatment options as well as outcomes information. She currently serves on the Board of Directors of two immune-focused biotech companies, Transgene and Pieris Pharmaceuticals. She was the COO of Celsius Therapeutics, an autoimmune disease and cancer-focused biotech company, where she established and managed the company’s operations from inception through the company’s first year post-launch. Prior to founding Outcomes4Me, Maya held senior leadership positions at pharmaceutical companies, Novartis and Sanofi, the Boston Consulting Group, as well as research positions at MIT.. As SVP and Global Head Oncology Policy and Market Access at Novartis, she drove the overall worldwide strategy and operations for the Novartis oncology business on pricing, market access, stakeholder engagement and other areas related to patients’ access to Novartis oncology products including the creation of payer-relevant clinical, real world and economic evidence. At Sanofi, Maya served as the VP and Head of Global R&D Strategy, External Innovation and Science Policy, playing a key role in establishing Sanofi’s new R&D model and open innovation approach. Maya has authored numerous scientific and strategy publications and has received several awards. Maya earned her BS in Biology and in Electrical Engineering and Computer Science, MS in Toxicology, MEng in Electrical Engineering and Computer Science, and ScD in Electrical Engineering, Computer Science and Systems Biology at MIT.
Dr. Øystein Rekdal is the co-founder and CEO of Lytix Biopharma, a clinical stage biotechnology company developing oncolytic peptides with the potential to personalize immunotherapy. Øystein has an extensive research background in tumor immunology and oncolytic peptides. His personal connection to cancer lies in his grandfather who was diagnosed and operated on for a solid cancer in his stomach. Øystein received his PhD from UiT – The Arctic University of Norway in cytokines and tumor immunology. After his PhD, Øystein was trained in Peptide synthesis technologies at Centre National de la Recherche Scientifique, in Strasbourg and followed a course at Harvard Medical School, Boston termed, “Tumor Microcirculation, Angiogenesis and Metastasis” His postdoctoral work furthered research on oncolytic peptides and their abilities to induce potent tumor specific immune responses. Øystein has a visiting professor position at UiT, where he teaches about innovation in biomedicine. He has also completed a Norwegian leadership development program called “Leadership in front
Dr. Gilles Pagès is the chief scientific officer of Roca Therapeutics / InfAngioPharma, a biotechnology company focused on personalized prognosis and therapeutic solutions to cancer. Gilles is the director of
research at French National Institute of Health and Medical Research (INSERM) and consultant for the Scientific Center of Monaco (CSM). Gilles has received several international awards, published 150 papers,
authored 10 patents and participated in three clinical trials. Gilles obtained his PhD in molecular biology from the University of Nice.
Bob Manning is an experienced entrepreneur and the CEO at CureMatch, biotechnology digital health company focused on personalized medicine and combination therapy in oncology by using molecular profiles to determine the best treatment options for cancer patients. Bob has 20 years of experience in technology and health care, including medical device, IT and services. He is an expert at delivering products to the market and executing on business strategy. As co-founder of TruMed Systems, he transformed the way that physician offices manage and store vaccines, preserving efficacy and reducing disease outbreaks. He holds three patents from his work there. While at CareFusion he was an innovator in hosting PHI and HIPAA governed data, creating an analytics platform that generated millions in new incremental revenue. Bob has additionally worked at SAP, IBM, Teradata and Parametric Technology. Bob holds a BS from the University of Massachusetts and an MBA from Babson College.