Channeling Hope Foundation

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

10/19/2026

🧠💛 The More You Know: MRI & NALCN-Related Conditions

🔍 What does an MRI show?
MRI uses magnets and radio waves to create detailed pictures inside the body, without ionizing radiation. A brain MRI helps doctors examine brain structure.

🧬 Can someone with a NALCN-related condition have a normal brain MRI?
Yes! Published cases include both normal scans and structural differences. A normal MRI does not mean a person’s symptoms or challenges aren’t real.

đź’¤ Why might anesthesia be needed?
Clear MRI images require staying very still. Some children need sedation or anesthesia to complete the scan.

đź©ş What should families know about anesthesia?
Breathing difficulties and anesthesia sensitivity have been reported in some people with NALCN-related conditions. Experiences vary, so sharing the diagnosis, breathing history, and previous anesthesia reactions with the clinical team is especially important. Each person needs an individualized plan for anesthesia and recovery.

đź’› Your experiences matter.
Has your loved one had an MRI? What did you learn, and what helped you prepare? Sharing experiences can help families ask informed questions. Sharing findings with clinicians and researchers can also help build understanding of NALCN-related conditions. A special thank-you to Cora for sharing her experience and being such a trooper during her MRI! đź’›

FAMILY FRIDAY! Two families, James and Alex, from our community attended the Ultragenyx Rare Family Day in San Francisco...
10/16/2026

FAMILY FRIDAY!

Two families, James and Alex, from our community attended the Ultragenyx Rare Family Day in San Francisco, California earlier this month. They received travel scholarships through the RARE foundation that made this possible!

Living with an ultra-rare disease can be isolating. Finding community with others is crucial! We encourage our community members to attend events like this when able, or create your own with other families nearby. đź’™

💚 Exciting things are happening at Channeling Hope Foundation! 🧬Join us on October 14th at 9 AM Central for a community ...
10/12/2026

💚 Exciting things are happening at Channeling Hope Foundation! 🧬

Join us on October 14th at 9 AM Central for a community meeting discussing phase 1 of the clinical trial!

We’ll be joined by some incredible team members working to move this trial forward. This is a wonderful opportunity for our NALCN/CLIFAHDD community to learn more about the trial, ask questions, and hear directly from those involved.

Every step forward brings us closer to a future filled with more possibilities for our loved ones. 💙💚

đź“… October 14th
⏰ 9 AM Central
đź’» Virtual Meeting

Message us for the meeting link!

10/07/2026

WINS-Day 🎉

Last week our co-founders, Shayanne Martin and Dr. Jeremy Tanner, spent two days with the FDA, pharma, payors (insurance), statisticians, and fellow rare disease organization leaders in Washington, DC.

It was an extraordinary moment where global leaders came together to shape how we measure what truly matters for families - whether a treatment is making a person’s life better.

This work directly relates to how we capture meaningful change in our NALCN Natural History Study and CLIFAHDD Phase 1 trial. We are proud to have their voices in the room where it happened!

A WIN for the rare disease community is a WIN for Channeling Hope!Big things are happening at DEEP! đź’śFormerly DEE-P Conn...
09/30/2026

A WIN for the rare disease community is a WIN for Channeling Hope!

Big things are happening at DEEP! đź’ś
Formerly DEE-P Connections, DEEP has spent the past several months listening to families,
clinicians, researchers, advocates, and partners to help shape what comes next for
developmental and epileptic encephalopathies (DEEs) and other severe neurological
impairments(SNIs).

And now, they’re ready to share it.
✨ A new name and brand
✨ A new five-year Strategic Plan
✨ A completely redesigned website
✨ A bigger vision for connecting and supporting the community

This is about more than a new look. It’s about building on years of work while creating a
stronger, more connected future for families impacted by DEEs and other SNIs.
The mission hasn’t changed. The vision has grown.

Channeling Hope Foundation is proud to partner with DEEP and excited to celebrate this next chapter with them. đź’ś
Explore what’s new at www.dee-p.org

09/28/2026

Sometimes the literature hasn’t caught up with the families yet. 💚

A small number of individuals with CLIFAHDD have recently been diagnosed with growth hormone deficiency after caregivers noticed concerns about growth, advocated for further evaluation, and then shared what they learned with other Channeling Hope families.

At this time, growth hormone deficiency is not an established feature of CLIFAHDD, and we do not yet know whether these diagnoses are related to NALCN or are coincidental.

But that is exactly why sharing our experiences matters.

Growth hormone does much more than determine how tall a child becomes. In childhood, it is important for normal growth, muscle and bone strength, body composition, and regulation of glucose and fat metabolism. When a true deficiency is present, identifying it can open the door to appropriate evaluation and treatment.

So what can families do?

- Track growth over time.

- Bring concerns to your medical team.

- Don’t be afraid to ask about something simply because it isn’t described in the CLIFAHDD literature.

🤝 Share what you learn with our community.
When families report similar experiences, those observations can help other caregivers ask better questions—and can identify patterns worth bringing to clinicians and researchers.

Today’s shared observation could become tomorrow’s research question.

Because every family contributes another piece of the puzzle—and every new answer gives our community more reason to hope. 💚

Channeling Hope Foundation
More knowledge.
More research.
More hope.

Attention Channeling Hope community: Save the date for our October community meeting to learn more about the first-ever ...
09/21/2026

Attention Channeling Hope community: Save the date for our October community meeting to learn more about the first-ever clinical trial for CLIFAHDD Syndrome. Come with questions. We will have the clinical trial leaders ready to provide answers. Email [email protected] for a calendar invite.

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Pottawatomie County, OK
74873

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