Recap
Lyfebulb’s patient summit, “Empowering Lives: State of Transplantation”, brought together everyone involved in the transplant journey—recipients, donors, care partners, doctors, and industry experts with the goal to improve the quality of life and outcomes for everyone. We shared stories, learned from experts, discussed challenges, and discussed solutions.
Our event on October 4, 2024 at NYU Langone Health in New York City included:
- Inspirational Talks: Experts in the field of transplantation
- Engaging Panels: Discussions on important topics from both the patient and provider perspective, such as new treatments, care management, and future innovations in transplantation
- Networking Opportunities: Connecting with others who understand your journey
- Contribute to the Future: Offering your perspective through questions to panels and responses to a survey
- Peer-to-Peer Meet-Up: Meeting your fellow transplant peers in a closed session led by our TransplantLyfe Community managers (patients, donors and care partners only)
Takeaways
1. The Need for More and Better Matched Organs
Transplantation has huge benefits over life on dialysis. We need to take charge and educate patients on the choices they have in organ selection and matching. A much larger population does not even make the list and could benefit from transplantation.
We need to continue to examine new organ pathways (such as xenotransplantation and artificial organs) as an alternative to dialysis to expand the available organ pool.
2. Changing the Perception that One Year Survival is the (Only) Outcome of Measurement
The existing 93-98% one-year survival of the graft is a bar that is virtually impossible to beat for any new drug or care pathway.
Many of the current drug regimens are harming the transplanted organ long-term, while causing serious side effects and complications that reduce quality of life and create the need for more transplants to survive.
3. Engaging the Community to Record and Share Symptoms to Demonstrate, Clinically, Quality of Life Issues
Patient reported data will be required, ultimately, to demonstrate long-term needs and side effects.
SPEAKERS
Nicole Ali, MD
Clinical Associate Professor, Department of Medicine at NYU Grossman School of Medicine; Director, Quality, Transplant Institute at NYU Langone Transplant Institute
Russell J. Crew, MD
Assistant Professor of Medicine at NewYork-Presbyterian / Columbia University Irving Medical Center
Michael Goldstein, MD
Director of Organ Transplantation at Hackensack University Medical Center
Mark A. Hardy, MD, PhD (Hon), FACS
Director Emeritus and Founder, Renal and Islet Transplantation, and Surgeon, Abdominal Organ Transplantation and Islets at NewYork-Presbyterian Hospital/Columbia University Medical Center
Karin Hehenberger, MD, PhD
Founder & CEO at Lyfebulb
Eliezer Katz, MD, FACS
Chief Medical Officer at Eledon Pharmaceuticals
Robert Montgomery, MD, PhD
H. Leon Pachter Chair and Professor of Surgery Director at NYU Langone Transplant Institute
Kenneth Newell, MD, PhD
Chief Medical Officer at Eledon Pharmaceuticals
Anne B. Lawler, CSW, LCSW, ACSW, BCD
Assistant Professor of Medicine at NewYork-Presbyterian / Columbia University Irving Medical Center
Agenda & Video Recordings
Welcome Remarks & Introductions with Karin Hehenberger, MD, PhD, Lyfebulb and Robert Montgomery, MD, DPhil, NYU Langone Transplant Institute (Watch)
My Transplant Journey by Jeanmarie Ferguson (Watch)
How to Own the Organ Selection Process by Michael Goldstein, MD, Hackensack Meridian Health (Watch)
Optimizing The Match by Bonnie Lonze, MD, PhD, NYU Langone Transplant Institute (Watch)
Best Use of Current Therapies by David Cohen, MD, Columbia University Irving Medical Center / NewYork-Presbyterian Hospital (Watch)
Celebrities As a Vehicle to Influence Change in Healthcare by Mark Hardy, MD, Columbia University Irving Medical Center / NewYork-Presbyterian Hospital (Watch)
Fast Tracking Treatment Options: Regulatory Environment and Clinical Endpoints with Eliezer Katz, MD Eledon, Ken Newell, MD, Emory University, moderated by Karin Hehenberger, MD, PhD (Watch)
Aiming High: Less Drugs, More Organs: Tolerance by Ken Newell, MD, Emory School of Medicine (Watch)
Aiming High: Less Drugs, More Organs: Xenotransplant by Robert Montgomery, MD, DPhil, NYU Langone Transplant Institute (Watch)
Treating Patients Today by Nicole Ali, MD, NYU Langone Transplant Institute, and R.J. Crew, MD, CUIMC / NewYork-Presbyterian Hospital (Watch)
Ups and Downs in Caring for Your Transplant, Recipient Panel: LaVise McCray, Taryn Servold, Jeanmarie Ferguson, and Sam Dey moderated by Leslie Brille, Lyfebulb (Watch)
Quality of Life Panel with Anne Lawler, LCSW, Joan Kelly, RN and Jeanmarie Ferguson, moderated by Mark Hardy, MD (Watch)
Mind & Body by Alisha Hiebert, RYT, MBC, TransplantLyfe Community Manager (Watch)
Empowering Patients via Technology by Leslie Brille (Watch)
Closing Remarks by Karin Hehenberger, MD, PhD (Watch)
Thank You To Our Supporters
Eledon Pharmaceuticals is a clinical stage biotechnology company with immunology expertise that is developing therapies to protect and prevent rejection of transplanted organs, as well as to treat amyotrophic lateral sclerosis (ALS). The Company’s lead compound in development is tegoprubart, an anti-CD40L antibody with high affinity for CD40 Ligand (also called “CD154”), a well-validated biological target with broad therapeutic potential.
Memo Therapeutics AG (“MTx”) is a late-stage biotech company translating unique human immune responses into superior medicines through the development of best-in-class antibodies to treat viral infections and cancer.
We are an innovative global healthcare company, driven by one purpose: we chase the miracles of science to improve people’s lives. Our team, across the world, is dedicated to transforming the practice of medicine by working to turn the impossible into the possible. We provide potentially life-changing treatment options and life-saving vaccine protection to millions of people globally, while putting sustainability and social responsibility at the center of our ambitions.
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Lyfebulb is a patient engagement platform. Our mission is to reduce the burden of living with chronic disease through the power of the patient.
Under the leadership of Dr. Robert Montgomery, the NYU Langone Health Transplant Institute is a national leader in organ transplantation, excelling in heart, kidney, liver, and lung transplants. According to SRTR data, the institute boasts the fastest heart transplant rate in the Northeast, the top kidney program in the country, a 100% one-year liver transplant survival rate, and the highest-ranked lung transplant program in the U.S. These achievements highlight the institute’s expertise in treating complex cases.
