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 highlights from our 2024 Annual Report.
Awarded the Chan Zuckerberg Initiative Rare As One Grant
One of the most significant milestones this year was being awarded the Chan Zuckerberg Initiative Rare As One grant. This generous grant of $800,000 over five years will significantly enhance our organizational and research capacity. With these funds, we aim to accelerate our efforts in understanding and treating NALCN-related disorders, bringing hope to countless families.
Launch of the NALCN Patient Registry on RARE-X
In our continuous effort to support research and therapy development, we launched the first NALCN Patient Registry platform on RARE-X. This registry is a crucial tool for collecting and comparing patient data, which will drive research and improve our understanding of NALCN-related disorders. We encourage all families affected by these conditions to participate and contribute to this vital resource. Guidance for using RARE-X is located on our Family Resources page.
Advancements in Stem Cell Research
This year, we developed the first stem cell lines to support research and therapy development for NALCN-related disorders. These stem cell lines are a significant step forward in our quest to find effective treatments and, ultimately, a cure. We are optimistic about the breakthroughs this research could bring.
Funding Research and Celebrating Milestones
We are thrilled to have funded the first CHF NALCN research grants, supporting innovative projects that aim to deepen our understanding and develop new therapies. Additionally, we recognized the 10th anniversary of the discovery of IHPRF-1 (Infantile Hypotonia with Psychomotor Retardation and Characteristic Facies 1), bringing attention to how much has been uncovered in the last decade and recognizing the first families who spent several years without a diagnosis.
Expanding Our Reach and Impact
We excitedly welcomed Channeling Hope Foundation – Europe, headquartered in Germany, further extending our global reach and amplifying our impact. We connected with new families from Ukraine, Turkey, Japan, Chile, and many other countries, strengthening our international community. Our fundraising efforts also saw tremendous success, raising over $73,500 for research—a 57% increase from 2023. We are grateful to the 21 families who launched fundraising campaigns and the 255 donors who supported our cause.
Growing Our Community
Our social media presence has grown significantly, with 1,113 followers actively engaging with our content and supporting our mission. We are committed to building a strong, supportive community that shares our vision of hope and progress.
Looking Ahead
As we look ahead to 2025, we are filled with optimism and determination. Our progress in the past year is a testament to the power of collaboration, dedication, and hope. We are excited about the opportunities that lie ahead and remain steadfast in our commitment to supporting families and advancing research.
Thank you to everyone who has been a part of our journey. Together, we are channeling hope and making a difference.
2nd International NALCN Conference
Mark your calendars to attend the 2nd NALCN Channel & Related Disease International Conference in San Antonio, Texas, USA, on October 10-12, 2025. This event will bring scientists, health providers, and families together to discuss the latest advancements in NALCN-related disorders. It promises to be an inspiring and informative gathering, fostering community and collaborative research.
The conference will also launch the first-ever NALCN natural history study, a necessary step toward designing clinical trials. Friends of CHF can support this study by donating to our family travel fund.
Take a sneak peek at what we are planning here. Families, please complete this survey so that we can best serve you.
Channeling Hope is Growing!
With support from the Chan Zuckerberg Initiative, we are expanding to paid part-time staff in 2025. This will significantly improve our efficiency and impact! Please welcome our first hire, Kasey Feldt, as an administrative assistant. She inspires us with her dedication to the rare disease community:
Kasey has a strong passion for helping families afflicted by rare diseases after her first son, Dawson, was diagnosed and passed from Krabbe Leukodystrophy. She successfully pushed to get Krabbe Disease on the Virginia Newborn Screening Panel and has started a fund in honor of her son. While she does not have personal experience with NALCN disorders, she is driven to advocate and help families with rare diseases.
Click to listen to Kasey’s episode on the Once Upon a Gene Podcast
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