Recently, our Curing NF team attended the 2023 NF Conference, hosted by the Children’s Tumor Foundation, to learn about advancements in the field, new research outcomes, and more. This annual convening is the largest and most important gathering of neurofibromatosis (NF) research and clinical communities from around the globe.
During the conference, our team learned about a wide range of topics, including how gene therapy is used to treat other rare diseases and how these techniques could apply to NF. They also talked about the unique challenges of engaging the research community around NF.
Despite impacting 4 million people worldwide, NF is considered an “orphan” disease. This means that NF is considered rare enough that there isn’t a large market to access capital and other resources to help fight it. However, this hasn’t stopped our researchers from working hard to develop effective treatments and, one day, a cure.
On day three of the conference, Gilbert Family Foundation Scientific Officer, YooRi Kim, elaborated on our progress in a consortium talk updating the NF community about the Gilbert Family Foundation’s research efforts. YooRi also talked about the recent passing of Nick Gilbert, who died from complications related to NF and was the inspiration behind the organization’s research initiatives.
YooRi focused heavily on the impact Nick Gilbert made on our team, in the way he lived his life and his relentlessly positive outlook. Nick was tenacious and determined, and as YooRi explained, the Curing NF team has followed his example in their dedication towards innovative scientific research – including our Vision Restoration Initiative, Brain Tumor Initiative and Gene Therapy Initiative. YooRi also unveiled one of our newest initiatives, Operation Centralization, which reflects our concerted effort to create a standard set of preclinical models to be used in NF1 research.
Our NF team left the conference feeling inspired and hopeful about the next steps in our research. Thanks to events like this, we have a community of experts to connect with, who share our passion for accelerating a cure for one of the most common rare diseases in the world.