“LA CAIXA” FOUNDATION SUPPORTS FUNDACIÓN NOELIA

“LA CAIXA” FOUNDATION SUPPORTS FUNDACIÓN NOELIA – CHILDREN AGAINST CONGENITAL MUSCULAR DYSTROPHY CAUSED BY COLLAGEN VI DEFICIENCY – TO STRENGTHEN COMPREHENSIVE SUPPORT FOR FAMILIES AFFECTED BY THE DISEASE

October 14, 2026

Fundación Noelia, Children Against Congenital Muscular Dystrophy Caused by Collagen VI Deficiency, has received a €4,000 grant from the “la Caixa” Foundation, through CaixaBank, to support its project Specialized and Comprehensive Support for Families Affected by Collagen VI-Related Congenital Muscular Dystrophy. This contribution will help strengthen the specialized care, guidance, and ongoing support that the organization provides to people affected by this rare disease and their families throughout Spain.

Fundación Noelia is an international non-profit organization that represents and supports people affected by congenital muscular dystrophy caused by collagen VI deficiency and their families.

Congenital muscular dystrophy caused by collagen VI deficiency is a rare, progressive disease for which there is currently no cure. It affects the muscles and can lead to a gradual loss of mobility and independence. Receiving this diagnosis has a profound emotional impact on families, who must cope with uncertainty, fear, and, in many cases, a lack of information and guidance about the steps they should take.

In response to this reality, Fundación Noelia works to ensure that no family has to face this disease alone. Although much of the organization’s work is made possible through the commitment of families and volunteers, the growing need for support makes it essential to move towards a more specialized, structured, and continuous model of care.

This new grant will help strengthen the project Specialized and Comprehensive Support for Families Affected by Collagen VI-Related Congenital Muscular Dystrophy, which aims to improve support for families, facilitate access to specialized professionals, and provide up-to-date information about the disease and available resources.

The main objectives of this project are:

• Support newly diagnosed families, providing guidance and assistance during the initial stages following diagnosis.
• Act as a link between families and the network of medical and scientific professionals specializing in the disease.
• Maintain a direct support service from Monday to Friday to respond to families’ questions and needs.
• Provide up-to-date information on medical and scientific advances, research projects, social and financial assistance, and disability-related resources.
• Raise awareness of available resources and rights to improve the quality of life of affected individuals and their families.

The project aims to provide ongoing support to more than 150 families across Spain, helping to reduce uncertainty, facilitate access to specialists, and improve the quality of life of affected individuals and their families.

At Fundación Noelia, we would like to express our sincere gratitude to the “la Caixa” Foundation for this €4,000 grant, which represents an important boost to our ongoing work and enables us to strengthen the support we provide to people affected by congenital muscular dystrophy caused by collagen VI deficiency and their families.

Through CaixaBank’s extensive branch network, the largest in Spain, its professionals can identify the most urgent needs within local communities and channel funding from the “la Caixa” Foundation to help address them. In 2025, more than 5,500 projects run by nearly 5,200 social organizations received support.