Channeling Hope Foundation

Channeling Hope Foundation The Channeling Hope Foundation was started by parents of children with NALCN genetic mutations.

06/15/2026

Busy parent? This next step is quick and easy.

Step 2 on the NALCN Research Roadmap is joining the Contact Registry. By completing a short REDCap survey, you can choose to be notified about research studies, clinical trials, and opportunities that may be relevant to your family.

✅ Takes just a few minutes
✅ Helps researchers connect with interested families
✅ You decide if and when to participate

Find the Contact Registry link in our profile and take the next step on the Research Roadmap.

https://www.channelinghope.org/patient-research/

Follow for future posts in this series!

06/13/2026

FAMILY FRIDAYS 💙

We are so grateful for all of the families in our rare disease community, as well as the friends and loved ones who support our patients with NALCN related diseases.

Thank you for all of the support and we look forward to having more families join our community as access to genetic testing and awareness of symptoms increases!

06/08/2026

More You Know Monday!

The PlayING Lab: Play Interventions for Neurodevelopment Genetic disorders is run by Dr. Russell Lang, a Regent’s Professor in the UTSA Department of Educational Psychology and a member of UTSA’s Brain Health Consortium, and Dr. Leslie Neely, Director of Child and Adolescent Policy Research Institute at the UTSA College of Education and Human Development and Associate Director of the Brain Health Consortium.

The Brain Health Consortium has helped in developing collaborations with researchers working on NALCN studies at UT Health Science Center in San Antonio, TX.

This study is currently recruiting participants. DM us for more information and CHF can put you in touch with Dr. Lang.

This WINS-day deserves a permanent spot on our feed. 🤩Thank you to everyone who participated in this weekend’s fundraise...
06/03/2026

This WINS-day deserves a permanent spot on our feed. 🤩

Thank you to everyone who participated in this weekend’s fundraiser at the Little Words Project in Boston! Your generosity means the world to us and every dollar raised will directly support in increasing research and potential treatments for NALCN related diseases.

Thank you for the collaboration and hosting our community, and thank you .with.coco and for planning this fantastic event! 💗

06/02/2026

💙 More You Know Monday… on a Tuesday! 💙

We missed yesterday’s More You Know Monday because we were busy working on an exciting conversation about Peer-to-Peer Fundraising for Channeling Hope!

Many amazing community members have already stepped up to host fundraisers and make a difference for families affected by NALCN-related conditions. Whether it’s a golf tournament, bake sale, benefit dinner, birthday fundraiser, fun run, or something completely unique, we’d love to help you bring your ideas to life.

Interested in hosting a fundraiser for Channeling Hope? Reach out to Diana Duggan at [email protected] to get started. We can help you:
✨ Brainstorm fundraising ideas
✨ Provide resources and guidance
✨ Promote your event to our community
✨ Maximize your impact for NALCN research

Every fundraiser, big or small, helps move research forward and brings hope to families around the world.

💙 Let’s raise HOPE together for NALCN research! 💙

⭐️ ONE DAY ONLY! ⭐️We are thrilled to invite the Channeling Hope community to a special in-store event at Little Words P...
05/29/2026

⭐️ ONE DAY ONLY! ⭐️

We are thrilled to invite the Channeling Hope community to a special in-store event at Little Words Project in Boston’s Seaport neighborhood. LWP is known for its beautiful beaded bracelets, each carrying a meaningful word 🩷 these make great gifts for teachers, friends, family, or a gift to yourself!

On MAY 31st from 12-3pm ET every bracelet purchased from the Boston location will fund research to develop treatments for individuals affected by NALCN-related diseases. Bonus: you can meet some of our very own NALCN warriors in store!

Can’t make it to Boston?
You can definitely still participate. CALL IN your order (857-233-4639) from 12-3pm ET and help us raise hope as we work toward a clinical trial and impactful treatments for NALCN-related diseases.

You can create your own bracelet, or purchase our pre-made designs featuring RARE and HOPE.

Address

Pottawatomie County, OK
74873

Website

Alerts

Be the first to know and let us send you an email when Channeling Hope Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Channeling Hope Foundation:

Shortcuts

Share

Category