The commitment continues for the SCN8A association
February 9th is not a date chosen at random: it is International SCN8A Awareness Day. For this new edition, Moulin de Colagne wishes to turn last year’s momentum into an even more concrete impact for families. For one month, our signature stone-ground flour becomes the standard-bearer for a cause close to our hearts: the SCN8A France association.
Just like last year, for every bag of our ‘Julia’ flour purchased during this period, we will donate €1 directly to the association to fund research and support families. We are proud to renew our commitment, and we know we can count on you to help this cause shine even further and to stand with us in championing the association’s colors!
A simple action, a powerful impact!
The SCN8A mutation: informing, raising awareness, supporting
As a reminder:
The SCN8A gene mutation is a rare genetic disorder affecting approximately 700 to 800 people worldwide. It disrupts the brain’s electrical signals, leading to severe epilepsy and global developmental delay. Impacting learning, communication, language, and social interactions, it is a rare genetic condition considered ‘de novo’—meaning it is not hereditary but occurs spontaneously.
Raise awareness and provide support:
Behind these numbers are faces like Julia’s, the granddaughter of Mrs. Rech. Today, Julia is making progress thanks to specialized care and her parents’ training to assist her daily and prevent seizures. She moves forward every day at school and in rehabilitation. This is the hope we want to provide to families.
This campaign is an opportunity to raise awareness about rare diseases and the taboos surrounding disability and epilepsy. But it is also a way to express concrete support for the association and the affected families.
The missions and projects of the SCN8A France association for 2026:
In 2026, the SCN8A France association is focusing its efforts on two main pillars: family cohesion and support for research.
Cohesion to break the isolation:
The SCN8A association is working to organize “cafés papote” for families. These exchanges are vital for sharing information on daily life management and improving the children’s quality of life. Feeling heard and supported makes all the difference. For many, the world of disability is still unfamiliar territory; being able to connect with other families is therefore essential. A major project for this year: the association aims to organize a national gathering to bring together families from across France.
Research as a horizon:
Recent scientific progress has been immense, but it cannot reach the next milestone without resources. Whether it is gene therapy or new treatments, every breakthrough requires funding.
What is the current status of research on SCN8A?
Ensuring that research advances and awareness continues is essential for everyone affected by this mutation, as well as for future cases, in the hope of one day achieving a treatment and/or a cure with fewer long-term effects. Multiple research projects are currently underway regarding this genetic condition, and science is making significant progress on several fronts, including:
Targeted Treatments: A specific medication is currently in Phase 3 clinical trials in Spain. Its goal is to block the specific sodium channels impacted by the condition in order to treat epilepsy.
Gene Therapy and “ASO”: One promising avenue is gene therapy (led by researcher Manoj Patel), which aims to “correct” the defective gene. A second study is also underway by a laboratory working on ASOs—Antisense Oligonucleotides. This involves modifying messenger RNA to block the production of the protein created by the SCN8A gene, which is overproduced in certain mutations.
Data Collection and Information: Geneticist Michael Hammer, who discovered the condition, continues to compile statistics and manage the patient registry to collect and centralize medical and genetic data, helping physicians and researchers find new treatments
The explanations provided here are a simplified overview intended to raise awareness of SCN8A and to showcase the progress of current research. They are by no means a substitute for professional medical advice. For any scientific or medical specifics, or to support an affected family, we strongly recommend reaching out to healthcare professionals and the SCN8A association.
“Raising awareness about the disease means breaking down taboos surrounding disability, epilepsy and multiple disabilities. It also means reaching as wide an audience as possible, because a single person, a single researcher or a single laboratory can change everything” – Sandie Rech
Julia Flour: excellence in the service of a cause
More than just flour, a conversation:
Julia flour is not like other products. Slowly ground using a stone mill, it retains the essence of the wheat grain: its minerals, nutrients (fibre: 5.5g/100g) and authentic flavours. Choosing Julia means combining nutritional excellence with solidarity.
- 100% French wheat from the sustainable Limagne region.
- Stone-ground to preserve all the nutritional richness and authentic flavour of the wheat.
- A flour with a fine texture and distinctive cream colour.
For you, artisan bakers, this is an opportunity to showcase this exceptional raw material. By offering unique creations, you highlight your expertise and transform your shop into a place of connection. It is a unique chance to share your passion while proudly championing the cause of the SCN8A France association.
For you, customers and food lovers, it is a simple gesture: by purchasing your usual bread made with this flour, you treat yourself while supporting research and the families affected by the condition
A mechanism for enhanced solidarity
For this 2026 campaign, we have decided to add further levers for action:
- 1 bag (25kg) purchased = €1 donated: Bakers remain the pillars of this initiative. It is through their commitment that conversations start in-shop and awareness grows.
- Social Media Bonus: For every creation shared with the hashtag #farinejulia that tags us, the Mill will add an extra €1 for the association. Your visibility makes a difference.
- For individuals: Julia flour is available in 5kg bags at the Mill’s drive-through for your homemade breads, brioches, or any other delicious treats
Each batch takes on an extra human dimension. When making Julia bread, artisan bakers use flour from the sustainable Limagne supply chain, which respects both the land and people. It is this combination of artisan excellence and human solidarity that makes this initiative so powerful.
Feel free to share the information on social media and share your creations by tagging us #farinejulia. Every share is another opportunity to raise awareness about the disease.
Visit our social media pages to follow the campaign and help us raise awareness about this disease. And visit the association’s social media pages to support them.