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Fundación Noelia has received support from the “la Caixa” Foundation, through CaixaBank

Noelia Children’s Foundation against congenital muscular dystrophy due to Collagen VI deficiency has received support from the “la Caixa” Foundation, through CaixaBank, to promote the “You are not alone” project, which aims to promote a virtual community of affected and families with Congenital Muscular Dystrophy due to collagen VI deficiency, which will directly contribute to their emotional well-being, as well as improving their mental health. The social entity has received a financial contribution of 6,000 euros.

The Noelia Foundation is an international Spanish non-profit organization that represents and welcomes people affected by Congenital Muscular Dystrophy due to collagen VI deficiency and their families.

Congenital muscular dystrophy due to collagen VI deficiency is a very serious disease, among rare diseases, that affects children and has no cure today. It is a degenerative disease at the muscular level, caused by a mutation in one of the three genes involved in collagen synthesis (COL6A1, COL6A2, COL6A3). A disease that progresses, until it causes the total or partial loss of autonomy of the people who suffer from it.

Many of those affected lose the ability to walk within a few years of life, while some manage to maintain it until the arrival of adolescence, but the serious problem is that before the loss of walking, respiratory failure appears that develops. It is established progressively, without losing sight of the complications derived from it, to the point of needing both nocturnal and daytime ventilatory support.

Noelia Foundation has been active for seven years, and many families have since contacted us in search of answers and understanding.

For all this, this new impulse from the “la Caixa” Foundation will allow the entity to continue offering support and accompanying families in the different stages of the disease, something essential, after receiving this diagnosis, also taking into account the needs and obstacles that come with living with this rare disease.

Those affected feel tremendously understood and identified when they meet people in the same situation, thus increasing their capacity for resilience. Given the low prevalence of this disease, it is difficult to meet someone in the same situation in a close environment.

This project aims to achieve the following objectives:

  • Establish ties of communication and advice taking advantage of new technologies and generate a structure of mutual support.
  • Accompany newly diagnosed families.
  • Provide information to families about the disease and its development, available resources and aid, studies and scientific advances, as well as all the information necessary to improve their situation, quality of life and inclusion in society.
  • Expand our link of action between the scientific and medical community and families for quality healthcare in equality.

And to achieve these objectives, different actions have been developed:

  • Organize global virtual age groups once a month for people with Collagen VI and their families. Meetings are held by video call.
  • Through the website, create a dynamic section for families and professionals that helps the daily experiences of those affected called “Living with Collagen VI”
  • Improve the current channel of contact between affected people and experts and reference hospital centers, and also improve the communication channels of the Noelia Foundation and their families, being able to respond appropriately to their doubts and concerns by email, telephone or video call. .
  • Strengthen the Colágeno VI community by keeping all the entity’s communication channels (social networks, web…) updated, in order to be able to provide quality information to those affected and to society in general.

 

 

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