A community of researchers and families driven to advance care and develop treatments for those affected by NALCN-related disorders. (NALCN, UNC80, UNC79, FAM155)
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
Researchers on Channeling Hope's scientific advisory board need to collect a skin biopsy from a current patient to develop stem cells to use in testing possible treatments in the lab. The ideal patient is Wyatt, a 12-year-old boy in Ohio with a common variation of a mutation in
We are excited to announce our participation in a clinical trial focused on improving caregiver well-being. This study is conducted by Dr. Bridgette Kelleher through Kelleher Lab at Purdue University. Caregivers of individuals with NALCN/UNC80 genetic mutations living in the United States* are eligible. *We seek to be inclusive
