A community of researchers and families driven to advance care and develop treatments for those affected by NALCN-related disorders. (NALCN, UNC80, UNC79, FAM155)
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
You can access the recording of this webinar on our Family Resource Page. Access is for members only (free option available). Family ResourcesInformation about NALCN Channel-related disorders can be found in this Fact Sheet from the New South Wales Center for Genetics Education. Please log in to access our family
Channeling Hope Foundation held a second "Friends and Family" webinar in February. The webinar was recorded for those that could not attend. Here's a summary of what we covered in the webinar. INCLUSION PILLAR REVISITED The Channeling Hope community of researchers and families are driven to
