About Us
The Channeling Hope Foundation was started by parents of children with NALCN genetic mutations who connected over a shared hope for a world free of NALCN channel diseases.
The Channeling Hope Foundation was started by parents of children with NALCN genetic mutations who connected over a shared hope for a world free of NALCN Channel-related disorders.
Genetic mutations of the NALCN Channel (also known as the Sodium Leak Channel) and associated proteins (UNC79, UNC80, FAM155) are ultra rare genetic disorders. The NALCN Channel plays a crucial role in regulating the electrical activity of neurons and other cells.
Supported by a global network of scientists and a small but mighty community of affected families, the Channeling Hope Foundation was established in 2023 to work together to advance care and develop treatments for children affected by NALCN Channel-related disorders.
Our mission and vision
Our mission is to build a global community of families and researchers to advance care and develop treatments for individuals affected by NALCN Channel-related disorders.
Our vision is a future free from NALCN Channel-related disorders.
Our pillars of hope
- Collaboration - We can go further and go faster if we work together with our combined expertise, passion, and resources. Our only nemeses are NALCN Channel-related disorders.
- Ambition - We may be a small rare disease organization, but we can make a mighty impact for children and family affected by NALCN Channel-related disorders.
- Transparency - We believe that financial and scientific transparency and accountability are critical to maintaining trust and support in our rare disease community. Any shared resource is valuable and should be used wisely.
- Inclusion - We welcome the involvement and input of any and all patients, families, friends, and scientists who are interested in joining our efforts towards a world free of NALCN Channel-related disorders.
Our Commitment to Transparency
The Channeling Hope Foundation is a parent-led organization formed by driven families, friends, and scientists volunteering their time to work together towards our shared mission and vision of a future free of NALCN Channel-related disorders. All start-up and operation costs in the first year were self-funded. No board member, other than the Executive Director as grant lead for Rare as One, receives financial compensation for their role.
We believe in the importance of accountability and financial transparency, and in earning and maintaining the trust of our community members and supporters. We will publicly post our annual IRS return (Form 990) and financial statements.
Board of Directors
Jeremy and Shayanne are the parents of Cora, who at 6 weeks old was diagnosed with CLIFAHDD Syndrome. With only a handful of cases diagnosed worldwide, they set out to learn as much as possible about CLIFAHDD, NALCN Channel-related disorders, and other ultra-rare diseases using their backgrounds in neurology (Jeremy) and project/grant management (Shayanne). Their wish for Cora—who is intellectually and physically impaired—is to discover treatments and strategies that enable her and other children affected by NALCN Channel-related disorders to engage meaningfully with the world and to enjoy every day to the fullest.
They were fortunate to learn they were not alone in their wish. They met an incredible team of similarly motivated families and scientists internationally working diligently to advance the knowledge and treatment of NALCN Channel-related disorders. They also saw the impact that such a collaboration of engaged families and scientists can have in developing treatments for ultra-rare diseases. They sought to establish the Channeling Hope Foundation to further foster collaboration between families and scientists to continue to expand research, improve care, and provide hope for children and families affected by NALCN Channel-related disorders.
If you are able, we invite you to support Channeling Hope Foundation in honor of Cora.
Through Suzanne’s involvement in the development of the Channeling Hope Foundation, she, alongside her husband, Dave, are excited to expand their dedication in supporting their son Lukas. Lukas was diagnosed in 2019 with an ultra-rare neuromuscular disorder of the sodium ion channel. Lukas's love for the library, reading, adventures, and history serves as a reminder of his vibrant spirit, and it's this very spirit that fuels Suzanne, Dave, and their family's determination to make a lasting impact on the lives of those affected by these complex conditions.
If you are able, we invite you to support Channeling Hope Foundation in honor of Lukas.
Diana is the mom of Amanda, who was diagnosed with NALCN Channel-related disorder in September of 2020. Amanda is a fun and sassy 7 year old who loves trips to Disney (she is a thrill seeker) and loves being with family and friends. Amanda’s smile makes everyone smile and even though she cannot verbally communicate, she makes it well known what she wants!
Along with her husband Mark and older daughter Mckayla, the Duggan family is very excited to lead fundraising efforts for the Channeling Hope Foundation in order to accelerate research.
If you are able, we invite you to support Channeling Hope Foundation in honor of Amanda.
Jill was introduced to Channeling Hope Foundation through her daughter Rory’s participation in a phenotype study for NALCN Channel-related disorders. The foundation's mission inspired Jill to join their efforts. Jill is excited to be a part of the collaboration between patient families and scientists to drive progress and offer hope.
If you are willing and able, we invite you to support Channeling Hope Foundation in honor of Rory.
Christian Velasco is a CPA who has over 16 years of accounting experience, as well as over 6 years of experience providing assurance and tax services to not-for-profit entities, providing value in financial reporting as well as internal control related matters over the financial reporting systems. He currently works in Internal Audit at a mid-size financial institution but has always held high regard for organizations that support the underserved and strive to make a difference in the world. Chris was moved by Shayanne and Jeremy’s journey with Cora and the efforts they were making to help their daughter and others with NALCN Channel-related disorders to help further awareness and research to provide better treatment for others impacted with the same condition. He recently joined the Channeling Hope Foundation Board in 2023.
Staff
With support from the Chan Zuckerberg Initiative, CHF is excited to expand to paid part-time staff in 2025 (with 20-50% positions). This will greatly improve our efficiency and impact!
Kasey lives in Franklin, Virginia with her husband, son, and two dogs. 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 herself, she is driven to advocate and help families with rare diseases. She holds a Bachelor’s degree in Human Services and Psychology from Old Dominion University.
Click to listen to Kasey’s episode on the Once Upon a Gene Podcast
Corporate Volunteers
Brett believes patient empowerment is key to improving health outcomes and the patient experience. As an entrepreneur, he has developed technologies to help patients actively participate in their care. Brett donated his time to build Channeling Hope's website and continues to provide troubleshooting services when we're in a bind!
As the co-founder of Karate Health, Brett created technologies to support people living with lupus, multiple sclerosis, rheumatoid arthritis, Crohn's disease, and other autoimmune diseases. Acquired by Progentec, the digital health technologies he built now serve 120,000 people quarterly.
Shannon leads Channeling Hope's efforts to expand NALCN medical information available to researchers. By generating the most comprehensive NALCN Channel-related disorders data collection program, we can accelerate research and the development of new drugs, devices, or other therapies.
Contact Us!
If you have any interest in joining our effort (in any capacity that you are able) or if you have any questions about the organization, please email us anytime at info@channelinghope.org.