1000 Butterflies for Fabry

butterfly

Make your own Origami Butterfly and raise awareness for women with Fabry

Latest news from the Spanish Fabry Patient Association

www.fabryahora.com

A new communication campaign is to be launched in Spain to raise Awareness of Fabry disease in woman. The new initiative called ‘1000 Butterflies for Fabry’ will be posted on the Fabry Ahora website early December.

The objective of the project is to increase awareness that women with Fabry disease can be affected by the disease in the same way as men.

For some time, it was believed that women were only carriers of the disease and didn’t have symptoms. Nowadays, studies have demonstrated that women also suffer the effects of the disease. This is why it is important to, not only increase the awareness of this initiative, but also to provide relevant information.

Why the butterflies?

“Fabry, ahora también nosotras” (the translation would be: Fabry, now the women too) is an initiative by the Spanish Patient Organisation www.mpsesp.org with the collaboration of Shire Pharmaceuticals.

There are several reasons as to why the use of Butterflies:

  • It is a feminine symbol of hope.
  • The metamorphosis of the butterfly symbolises a change: Fabry Ahora is looking for a change in society, the medical community and above all in Fabry patients.
  • One of the main objectives is that female patients change from “carriers who feel guilty” into “positive, fighting patients”. That is, from “hidden caterpillars” into “butterflies”
  • Patients should be well informed so that they can make the right choices about treatment and be confident in the future. This symbolises freedom for women with Fabry disease.
  • The butterfly has all these meanings: femininity, transformation and freedom.

Why Origami?

The use of Origami avoids showing the butterfly as an insect. It allows the symbolism to be more specific. In fact, this origami has been created exclusively for Fabry disease, which is unique if used as a Logo.

Why 1000?

A Japanese tradition says that making 1000 origami figures allows a wish to come true.

The wish of the Patient Organisation in Spain is that all women with Fabry disease feel that they are supported, that there is support for their families, for the Doctors that treat them, for their social environment and for all the community.

The 1000 Butterflies Campaign:

Followers will be asked to create their origami butterfly (instructions will be available through a video tutorial or pdf). Participants will be encouraged to take a personal photo with the origami butterfly and send it to Fabry Ahora (a contact form will be available online on www.fabryahora.com).

When a certain number of Origami butterflies is reached, a donation will be given to the Patient Association. Additionally, a wall with all the photos received will be created and posted on their website.

Hopefully, this initiative will generate more interest from the media and the Fabry community in Spain but also worldwide.

We invite all the women Fabry Patients to take part and send their Origami butterflies to the Fabry Ahora Team in Spain.

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