Newsletter Archive

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 his NALCN research in

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 the NALCN

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 advance care and develop

“Rare diseases may be individually rare, but they are collectively common. There are millions of people living with rare diseases. Today and every day, doctors like me care for rare, and it’s our privilege.” - Dr. Wendy Chung

Our community is growing! We have nearly 900 followers across our platforms from at least 27 countries. Our social media posts reach over 5,600 individuals throughout the world. Below is a map showing where our followers are located. One of the foundation’s pillars is INCLUSION. We welcome the involvement

On behalf of the entire Channeling Hope Foundation team, we extend our heartfelt gratitude for your support! Your contribution plays a crucial role in helping us create a positive impact on lives affected by challenging NALCN diseases. We are excited to share an infographic that encapsulates the significant milestones and

Introducing the CHF Scientific Advisory Board We’re excited to announce our Scientific Advisory Board! We are fortunate to be advised by world experts in NALCN and related diseases—spanning neurobiology, neurophysiology, translational science, pharmacology, gene therapies, and clinical research and care —who share our vision of a world free

In case you missed the webinar or want to revisit the content we shared, you can access the recording through the link provided.

Thank you to everyone who has signed up with us! So that we can send you messages of most interest to you, please tell us who are (family member, scientist, etc.) by completing this survey. A handful of NALCN families and 40+ researchers and physicians are only a few days

After months of building connections with families and scientists over a shared hope for a world free from NALCN channel diseases, we officially launched as the Channeling Hope Foundation on July 12, 2023. We’re looking forward to making more connections at the first-ever workshop on NALCN, bringing together patient families,

🧬August 1, 2023: Our fundraising for NALCN genetic disorders was kicked off with two initial GoFundMes inspired by our children, Cora and Amanda. We are grateful to our friends and family who have believed in our cause from the very beginning. We look forward to continuing our fundraising efforts as