Everyone who attends this international gathering of academics, researchers, and industry will play a part in shaping the future direction of INAD/PLAN-specific research and help us build a comprehensive and collaborative strategy to combat this cruel disease.
FAIRFIELD, N.J. (PRWEB) November 04, 2021
The INADcure Foundation, a 501c3 nonprofit charity supporting the development of treatments, including a cure, for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN), today announced the first international scientific conference focused specifically on increasing awareness, sharing knowledge and identifying opportunities for collaboration on INAD and PLAN. The event, the International Scientific Conference on Infantile Neuroaxonal Dystrophy and other types of PLA2G6-Associated Neurodegeneration (PLAN), will take place virtually on November 10-11, 2021. Registration is open through November 6, 2021.
INAD is an ultra-rare disorder, with no known treatment or cure, affecting approximately 150 children worldwide. Like other more common neurodegenerative diseases such as Parkinson’s and Alzheimer’s, INAD is a progressive disease and symptoms include poor motor function, involuntary eye movements, seizures, hearing loss, and difficulty swallowing and breathing. Most children with INAD do not live beyond age 10. The goal of the scientific conference is to advance research and build a collaborative community engaged in finding treatments and a cure.
“The INADcure Foundation is the only patient advocacy organization dedicated exclusively to advancing INAD research and supporting the INAD community worldwide, and we are extremely proud to launch our inaugural scientific conference, bringing together a dream team of experts focused on therapeutic solutions and treatment innovations,” said Leena Panwala, Founder and Executive Director, INADcure. “Everyone who attends this international gathering of academics, researchers, and industry will play a part in shaping the future direction of INAD/PLAN-specific research and help us build a comprehensive and collaborative strategy to combat this cruel disease.”
At the November event, scientists and experts from academia, the pharmaceutical and biotech industries, government agencies, and key leaders from patient advocacy organizations will gather to share knowledge on INAD and PLAN and present the latest discoveries in INAD/PLAN research. Building off the conference theme of “Come for the Science, Stay for the Cure!” the conference will also serve as the kickoff for the INAD Collaborative Research Network, an initiative designed to create opportunities for data sharing and to foster academic-industry collaborations to accelerate therapeutic and translational research. “We believe that by introducing more researchers and industry scientists to this childhood neurodegenerative disease, we are reducing the risk of being left behind when emerging technologies and opportunities for treatment become available. We want the scientific community to know that the INAD community has been mobilized and is ready to work together to change the outcome for children battling this fatal disease,” said Panwala.
“INAD is a devastating disease for which there are currently no treatments available,” said Hugo J Bellen, D.V.M., Ph.D., Baylor College of Medicine and Co-Chair of the Foundation’s Scientific Medical Advisory Board. “Recent studies have shown that there are disease mechanisms shared with other neurodegenerative diseases such as Parkinson’s disease and Lewy Body Dementia, and with lysosomal disorders such as Gaucher’s disease. This conference, the first of its kind, will bring together researchers to discuss the significance of shared biological pathways and help identify common therapeutic targets for drug development. Our goal is that more collaboration and discovery will help inform future research initiatives and further our efforts toward finding a cure.”
The conference is made possible thanks to a generous grant from the Chan Zuckerberg Initiative. In 2020, the INADcure Foundation was selected to be part of the Chan Zuckerberg Initiative’s Rare As One Network, a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. Medical and scientific professionals in academia, government, biotech, and pharmaceutical industries can learn more about the scientific conference and see a draft agenda here. Session topics include the pathogenesis and clinical aspects of INAD, clinical trial readiness, gene therapy updates, and more.
About the INADcure Foundation
The INADcure Foundation is a 501(c)(3) nonprofit charity whose mission is to support the development of treatments, including a cure, for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN). Its work includes educating the public about INAD and other forms of PLA2G6-related neurodegeneration, advocating for better access to treatment, and supporting the families and caregivers of children diagnosed with INAD worldwide.