Little Words, Big Impacts

A lot has happened since Rare Disease Month! In this newsletter, we share an update from CHF's research fellow, Dr. Nattaya, an exciting community event & fundraiser happening this month, and our community's biggest NALCN-related concerns. Catching Up with Dr. Nattaya Thongsepee From Thailand to France,

Ready and Raring for Rare Disease Day 2026

At Channeling Hope, we are gearing up to celebrate Rare Disease Day 2026. Rare Disease Day is a globally coordinated movement dedicated to people living with rare diseases to advocate for equity in social opportunities, healthcare, and access to diagnosis and therapies. Building an international rare disease community is part

From possibility to progress

Highlights that shaped 2025 As we reflect on a truly transformative year, we are grateful for your unwavering commitment to the Channeling Hope community. Below is a snapshot of our 2025 achievements—made possible because families, researchers, and supporters across the globe deepened their collaboration to advance care and accelerate

Thankful

We are beyond grateful for the incredible support that made last month’s NALCN Channel & Related Diseases Conference such a tremendous success. Your commitment and collaboration brought this event to life, and we couldn’t have done it without you. We’re proud to share some of the highlights

It's almost here!

We are so excited to being welcoming our community to San Antonio for what we are sure will be a celebration of hope and learning with the whole NALCN Channel and related disease community. If you are unable to join us in Texas, please consider registering for virtual attendance. This

Time 2 Celebrate!

We are celebrating 2 years as the Channeling Hope Foundation! This milestone has us looking back at all we have done, and thinking forward to the big plans we have for the future. We are so excited for what is next, and so grateful to have you with us!

Big News! Big Changes! Bigger Plans!

Early Bird Registration Extended to July 15 - We are thrilled to announce that registration for the 2nd International NALCN Channel & Related Diseases Conference is now open and early bird registration discounts have been extended to July 15. Join us in San Antonio, Texas, from October 9-12, 2025, for

EXCITING NEWS: Registration Now Open for NALCN 2025!

We are thrilled to announce that registration for the 2nd International NALCN Channel & Related Diseases Conference is now open! Join us in San Antonio, Texas, from October 9-12, 2025, for an incredible event dedicated to advancing research and support for NALCN-related conditions. Event Details: * Dates: October 9-12, 2025 * REGISTER

Patient Families: Make your mark!

April 1, 2025 Update: We asked and 63 of you responded! Drumroll please... Channeling Hope Foundation was 1 of 5 organizations selected for a natural history study! Families, if you haven't completed this survey, please do so! We still need to identify as many patients as possible to

From Milestones to Momentum: Reflecting on 2024, Building in 2025

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

Patient Data Collection through RareX is Live

Originally posted 10/28/2024. Updated 5/28/2024 to reflect ongoing data collection through RareX. RareX is the host of the first patient registry for NALCN-related disorders. Data provided by families will provide a better understanding of the most common and impactful symptoms of NALCN-related disorders. The process for

CHF Science Around the World

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

It's our 1st Birthday!

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

Skin to Stem: One family's odyssey to the space city to support CLIFAHDD research

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

Project Wellcast: Clinical Trial

August 2025 Update: Enrollment has closed. We hope all the families that participated learned valuable play and/or coping skills. 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.

Phenotype Study Webinar

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

Scientific Update

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

Featured

Rare Disease Day

“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

Growing Global Community

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

2023 Annual Update

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

Website Updates

In this edition: What's new on our website | Merchandise available for a limited time | Promotion for Giving Tuesday A special note from our Board: The US is celebrating Thanksgiving on November 23rd. We thank you for all of your support this year! We have a new webpage for

Scientific Advisory Board

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

Members only

Featured

CHF Webinar Series Kickoff

CHF Family & Friends Webinar

You can access this past webinar and all webinars through the family resources page on our website. Subscription is required (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

Thank you for signing up & Greetings from Spain!

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