The support initiative for children with NALCN diseases

It takes a whole village to raise a child. But when a child suffers from an extremely rare neurological disease, families need much, much more help – we know this from experience. That’s why we founded the Channeling Hope Foundation Europe, which supports physically and mentally impaired children, especially those with NALCN disease, and their families.

This is us

Our son Henry is an absolute dream child. The first few months of the pregnancy were completely problem-free and without complications. It was not until the 21st week of pregnancy that abnormalities were discovered, but genetic tests were unremarkable.

When our son was born in 2015, he developed differently than other children. He usually reached important milestones in the first years of infancy and early childhood much later or not at all. At the end of 2020, we knew for sure: Henry has a spontaneous mutation on the NALCN gene. His extremely rare disease is called CLIFAHDD syndrome – in the long form Congenital Contractures of Limbs and Face, Hypotonia and Developmental Delay.

What does that mean for our son: Henry will remain at the level of a toddler forever, he is non-verbal and can walk a few steps with support. That’s one side. And the other? Henry loves his older siblings Jule and Luis and shouts for joy when Grandma and Grandpa come to visit. Henry is always in a good mood, happy, very empathetic and wraps everyone around his little finger with his charming manner. Together with doctors, therapists and carers, we help him to master his everyday life and make his life as pleasant as possible.

Strong together: An initiative to support NALCN research and families

There are 100+ people worldwide with a NALCN-related gene mutation. Henry is one of them. There are no approved therapies for such extremely rare diseases and there are few information options. It is important to take the initiative yourself, do research and network around the globe.

So in 2023 we traveled to Spain, where the first NALCN congress took place in Alicante. There we met people, researchers and doctors who are very interested in Henry’s genetic defect and are committed to researching and developing new treatment options for this devastating disease. But: Of course, this requires money from donations or EU funding.

So we founded the Channeling Hope Foundation Europe, the European counterpart to the foundation with the same name in the USA. Since then, we have been in close contact with the initiators and families in order to support doctors and researchers with donations and other funding to create a world free of NALCN-related diseases and thus a better life for affected children.

The mission of the Channeling Hope Foundation Europe

The purpose of the non-profit organization is to promote science, research, development and education to improve the care and treatment of patients and their families affected by very rare genetic diseases – particularly those related to the NALCN ion channel.

We make this possible by

• supporting people affected by rare diseases – especially NALCN ion channel-related disorders – and their families preventively & curatively
• improving the quality of life of people affected by severe neurological developmental disorders, especially those caused by NALCN mutations
• building an international network of patients, doctors and researchers
• supporting the associated social institutions/organizations

All donations and proceeds are used to promote science, research, development and education. On the other hand, the care and treatment of patients affected by NALCN should be optimized. This also includes the support of people with mental and physical disabilities.