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 an incredible event dedicated to advancing research and support for NALCN-related conditions.

Event Details:

• Dates: October 9-12, 2025
• REGISTER HERE
• Registration for patients with NALCN-Channel Related Diseases is FREE, but please complete forms for our headcount.
• Location: Hilton San Antonio Hill Country, 9800 Westover Hills Blvd., San Antonio, TX 78251
• BOOK ACCOMMODATIONS HERE

Why Attend? This conference is a unique opportunity for families, researchers, and health providers to come together, share knowledge, and collaborate on groundbreaking research. Highlights include:

• Scientific Presentations: Learn about the latest advancements in NALCN research.
• Family Support Sessions: Gain insights into the genetics of NALCN-related conditions and how to get involved in research.
• Networking Opportunities: Connect with other families and researchers at our celebratory dinner at Sea World on Saturday.
• Morgan's Wonderland Visit: Enjoy Friday at the world's only ultra-accessible theme park.

Additional Support: We are offering travel scholarships and registration support to ensure as many people as possible can attend. Childcare services will be provided during all conference sessions. Email nalcn2025@channelinghope.org for more information.

New Staff to Support our Mission: Introducing Emily Durham, PhD

Emily joins the Channeling Hope Foundation as our Research and Operations Manager, bringing her expertise in translational research, healthcare ethics, and rare disease advocacy. We asked Emily some questions to help our community get to know her.

How did you first learn of NALCN-related diseases?

For the last 3 years, I have been investigating TBCK Syndrome, and for the last 2 years, I have had the tremendous pleasure to serve as the part-time Director of Research Engagement for The TBCK Foundation. TBCK Syndrome is also called IHPRF3. Currently, I am working on a manuscript that better describes TBCK Syndrome phenotypes, especially what has been called "distinct facial features." As part of this work, I have been looking at facial features in individuals with IHPRF1 & IHPRF2 to compare to those with TBCK Syndrome with a goal of identifying facial features specific to each IHPRF, or to determine that there are similarities.

What is a hobby or interest that you enjoy outside of work?

I like to garden. I have collected plants from places I've lived, like State College, PA and places that are important to me, like my grandparents' log cabin, and I plant them in my yard to watch them flourish in a new place. I also have a vegetable garden growing peas, tomatoes, and peppers. This year, I hope to have some of the peas make it into the house rather than going straight from the garden into my kiddo's mouth.

Where is your favorite place to visit?

I love the beach! I am not particular about which beach, I just love the sand, the breeze, and the sound of the ocean.

Are you a dog person or a cat person?

I aspire to be a dog person and have a schedule consistent enough to care for a dog properly. In the meantime, we have cats. Persuasion, Brash, and Inconceivable. They enjoy the usual cat activities of following us around, unplugging my computer as a means of getting attention and aggressively snuggling anyone who is at all stationary.

What is your biggest goal for this year?

Now that I am on the Channeling Hope team, I have accomplished my goal of finding a role in the rare disease space that puts my experience in translational science, healthcare ethics, and advocacy to use. My next goal is to get to know the Channeling Hope community and help expand engagement to build a global community of families and researchers focusing on advancing care and developing treatments for individuals affected by NALCN Channel-related diseases.

Is there anything else you want to share with the community?

I am always happy to hear from community members. Feel free to reach out with your science questions or other issues you may need help with. If I don't know an answer, I will find one."

We are thrilled Emily is pursuing her rare disease passion with us! You can reach Emily at edurham@channelinghope.org.

Did you miss our webinar on Citizen Health? No problem! Catch up with our zoom recording.

If you are ready to sign up, use this link to be entered to win the incentive offered by Citizen Health. (www.citizen.health/summer4nalcn)
If you have questions or encounter any issues, please reach out to Emily (edurham@channelinghope.org).

If you want to know more about how to get on the NALCN Research Roadmap, visit https://www.channelinghope.org/family-resources/.

Keep an eye out on our social media channels for more breaking NALCN Science News!