1MIL’LYA
THE ASSOCIATION 1MIL’LYA
A heartfelt partner of the Mer et Montagne agency for the past two years
we would like to shine a spotlight on the 1MIL’LYA association.
In the small town of Sales, in Haute-Savoie, a deeply human initiative was born: the 1mil’Lya association. Founded in August 2024, it reflects a family’s determination to transform the challenge of a rare illness into a movement of love, solidarity, and collective support.
1mil’Lya – Town Hall of Sales
Lya, an Extraordinary Child Facing a Little-Known Disease
Lya is affected by alternating hemiplegia of childhood, an extremely rare neurological disorder caused by a mutation in the ATP1A3 gene. This condition is characterized by sudden episodes of alternating paralysis, accompanied by motor impairments, sometimes cognitive issues, and often severe disabilities.
As with many rare diseases, the path to diagnosis was long, marked by uncertainty and doubt. And once the disease was named, another reality became clear: the lack of curative treatments, the isolation of families, and the absence of structured support.
In the face of this situation, Lya’s family refused to remain passive. They chose to take action. That is how the association 1mil’Lya was born — with the mission of turning Lya’s story into a broader force for solidarity.
A Threefold Mission: Support, Awareness, Hope
The association 1mil’Lya has set itself the goal of acting on three main fronts:
- Providing concrete support to sick children and their families
The association works to fund adapted medical equipment, essential technical aids (wheelchairs, mobility devices, communication tools), and to ease the daily life of families through adapted holidays, parental support, and connecting caregivers with one another.
This support is not limited to Lya. The association aims to extend its help to all children affected by rare neurological disorders.
- Raising public awareness about rare diseases
Rare diseases are often invisible. Yet, they affect thousands of families across France. 1mil’Lya organizes events to raise awareness, spark conversations, break the silence, and combat the discrimination that these children may face at school, in sports, or social activities.
- Supporting medical research
In collaboration with laboratories specialized in ATP1A3 mutations, the association donates part of the funds it raises to support scientific research—because research holds the promise of future treatments.
“Because a child’s smile is priceless”
The Patron of 1mil’Lya
Among the dedicated figures supporting the association 1mil’Lya, Florian Fillion, also known as IRON2F, holds a very special place. A seasoned ultra-trail runner, former firefighter, and founder of the Broken collective, he represents a powerful symbol of athletic and heartfelt support for children affected by rare neurological diseases.
More than just an athlete, Florian turns his races into true sources of hope. In June 2024, he led his team through a 105 miles tour of Mont Blanc in extreme conditions, successfully raising €10,000 for 1mil’Lya. His commitment, along with that of the Team Broken, is a powerful testament to their unwavering solidarity with children living with rare neurological disorders.
the Broken Collective Founded by Florian Fillion (IRON2F), the Broken Collective is a group of dedicated runners who turn their athletic challenges into humanitarian missions. Their primary commitment: supporting the association 1mil’Lya through charity events such as the Broken Race, a 24-hour ultra-trail where 100% of the donations go directly to the association.
More than just a physical challenge, Broken represents a collective energy where every kilometer run becomes an act of solidarity for children battling rare neurological diseases.
Concrete Actions in the Field
One of 1mil’Lya‘s greatest strengths is its strong local presence. From the very beginning, the association has been actively involved in organizing diverse, festive, and community-driven events that unite people around its cause:
- The Solidarity Carp Enduro in Rumilly
In April 2025, a major fishing competition brought together 16 anglers from across France for a 48-hour weekend at the Rumilly lake. Organized in partnership with the local AAPPMA, the event blended passion and generosity. All funds raised were donated to the association, helping to finance equipment for Lya.
- Running for Lya
In September 2024, the first edition of Running for Lya brought together dozens of participants on a charity course. Every kilometer run was a gesture of support—a way to raise awareness about the disease and to show Lya that she is not alone.
- Participation in Community Events
1mil’Lya has taken part in various community gatherings—fairs, flea markets, and local festivals—in partnership with towns such as Sales, Rumilly, and Valloire. The goal: to increase the association’s visibility, foster connections, and continue to inspire solidarity.
- Valloire Fair and the Ultra Celya
On Sunday, July 13, 2025, the resort town of Valloire came alive with a fair organized in support of 1mil’Lya. Throughout the day, participants enjoyed a warm meal and a friendly refreshment stand in a festive and caring atmosphere. A variety of activities delighted both young and old, with fun booths, children’s games, and relaxing moments shared over a drink—all in the spirit of generosity.
A Growing Community
The association continues to bring more and more people together. Thanks to the kindness of many volunteers, the involvement of local officials, sports clubs, partner associations, and residents moved by Lya’s story, the 1mil’Lya network grows stronger every month.
Today, it brings together dozens of members and donors, all united by a shared desire to make a difference in their own way.
On social media, 1mil’Lya shares updates, calls for projects, and small victories. The Instagram and Facebook accounts allow followers to track Lya’s progress, discover behind-the-scenes moments from events, or simply share in the emotion.
Agence Mer et Montagne is also a proud partner of SLA Valloire, which actively supports the 1mil’Lya association.*
Become a Solidarity Partner of 1mil’Lya—Just Like Agence Mer et Montagne
How can you support 1mil’Lya?
There are many ways to get involved:
- Join the association: For just €20 a year, you become part of an active and supportive community.
- Make a one-time or monthly donation: Donations are 66% tax-deductible in France.
- Take part in events: As a volunteer or simply by attending and showing your support.
- Spread the word: Talk about Lya, about alternating hemiplegia, and share the association’s publications.
- Offer local support: Propose a partnership, provide a space for events, or offer logistical or material help.
Follow and share their updates on social media:
Instagram: @1mil_lya
Facebook: 1mil’Lya
Donations can be made easily through HelloAsso:
https://www.helloasso.com/associations/1mil-lya
1mil’Lya is more than just an association. It’s a family’s heartfelt cry, a chain of solidarity, and a concrete commitment to bring a little magic back to childhood—even when it’s fragile.
And you can be part of it.
