Andrés Marcio Foundation

Improving the present and future of children with laminopathy

Improving the present and future of children with laminopathy Improving the present and future of children with laminopathy

“When you work in a small foundation with children with rare diseases, diseases that almost no one has heard of, if anyone at all, and you spend your time looking for contacts, financing, help, etc. and one day you arrive at the office and you find an email from Fundación MAPFRE telling you to send them a research project because they want us to form part of a new project called Sé Solidario (Be Charitable), you get a feeling of indescribable joy.

From this point, the Andrés Marcio Foundation and Fundación MAPFRE, through the Sé Solidario program, started up a professional relationship and also a friendship, thanks to all the people acting with solidarity and generosity who make up this program.

This was a golden oppportunity for us to give greater visibility to a rare disease called Laminopathy, thanks to the "Voces del alma" campaign in which major film dubbing artists lend us their superhero voices. The voice of Batman became the voice of the Andrés Marcio Foundation. Numerous media outlets highlighted this campaign and it was a massive support for a small foundation like ours.

But it didn't stop there. World Rare Disease Day is held every year on 28 February and after meetings with Fundación MAPFRE, they suggested we shoot a video featuring André and the people at the foundation.

Fundación MAPFRE organized awareness workshops in order to celebrate the first anniversary of the #SéSolidario program, sharing fantastic and emotional experiences together with other associations and NGOs in order to talk about our stories.

The best moment was when played the video that Fundación MAPFRE had given us whose slogan "You may have a rare disease put your hopes and dreams are not" perfectly sums up these children and their hopes and dream, which help us to carry on fighting for them every day. Thank you for your support.

Thank you very much indeed Fundación MAPFRE for this wonderful video which has marked a before and after for us. You are now very much part of the foundation, and our lives. Thanks to you, the work and goals of our Foundation are a bit better known.

Thank you for getting us involved in the Be Charitable program, in which you help small associations by supporting our causes and projects, not only by spreading the word and giving us more visibility but also through raising funds which are essential, in our case, to bolstering research work.

Thank you for inviting us on the radio to increase our visibility and for involving us in your initiatives.

And thank you so much for being part of this Andrés Marcio Foundation family.

Please accept our heartfelt thanks!

Laminopathy is a degenerative disease which currently has no cure. It presents itself in childhood and the symptoms, among others, are shortness of breath, heart abnormalities, loss of strength in arms and feet and weakness in the neck and trunk. Because they have much larger hearts than normal these children suffer conduction system disturbances and an elevated risk of death. The Andrés Marcio Foundation is dedicated to improving the conditions in which these children live, extending their lives and promoting research into finding a cure.

In order to provide this foundation with more exposure, at Sé Solidario we decided to record a video with Andrés and we promoted the #VocesDelAlma campaign. Through our program we have been able to support research on irregular heartbeat prediction systems and the sudden death of children affected by this disease.