A community of researchers and families driven to advance care and develop treatments for those affected by NALCN-related disorders. (NALCN, UNC80, UNC79, FAM155)
Help Us Make a Difference: Participate in Our Patient Survey Channeling Hope submitted an application for a funded natural history study through Citizen! This study aims to collect, analyze, and de-identify medical records from over 50 patients. As a small community, it's important we hear from everyone! This
Reflecting on 2024, the Channeling Hope Foundation (CHF) is proud to share the remarkable achievements and milestones that marked the year. Our mission to support families affected by NALCN-related disorders and advance research has been propelled forward by the dedication of our patient community, partners, and supporters. Here are some
We are very excited to be launching the RareX Registry to our families! This will be the first patient registry for NALCN-related disorders and will provide a better understanding of the most common and impactful symptoms of NALCN-related disorders. The process for patient data collection is a multi-step process. The
In our last newsletter, we shared highlights from our organization's first year in operation. In this issue, we share what our scientific community has been up to. Expanding research collaborations in Asia Dr. Arnaud Monteil, the Director of CHF's Scientific Advisory Board, was invited to present
In July, we celebrated the first anniversary of our founding, and August marks one year of having 501(c)(3) not-for-profit status. A message from our founders When our children were diagnosed with NALCN-related disorders, our doctors emphasized the crucial role of patient-led organizations in driving progress. And so a
