Our NGO for December is MirAME and like every month, at the end of your order you can make a micro financial contribution entirely for them.
The MirAME JCM association was born in 2021 , as a result of the diagnosis of Spinal Muscular Atrophy (SMA) disease of a baby named Mar.
What is this disease?
Spinal muscular atrophy, or SMA , is a degenerative disease that affects the motor neurons on which the muscles depend, for which the movement and strength of these is directly diminished or canceled depending on the degree, in our case it is the type I, the most serious since it starts earlier and the degeneration is faster.
Fortunately, in less than 4 years, 2 treatments have been approved that slow down degeneration , mostly at the time of application, but to date there is no cure. The fact that there are treatments has increased the hope and quality of life of patients, but we still have to work and continue fighting to find a cure.
In the weeks after Mar's diagnosis, they began to consider how the family could help Fundame (the Spanish foundation against SMA) to raise funds for research and help other families in the same situation.
How do they do that?
They did not want to ask for money without anything in return, so they manage it through their solidarity store, and they told Fundame , whose director recommended that they keep a part of the benefits they obtained since Mar's life was going to be very expensive. from that moment on. And that's how mirAME was born .
What is MiraME?
It is an online solidarity shop and they only work through Instagram. They sell artisan objects, for the most part, and the profits obtained are divided into 50% for Fundame, and the remaining 50% for Mar for her weekly therapies (physiotherapy and hydrotherapy), specific therapies in Madrid, adaptations of everyday objects for Vida de Mar (high chair, chairs, bathtub...), orthopedic products that are not partially or fully covered by Social Security (stroller, walker, custom-made seats, corset, orthotics for your feet, etc.).
What do they need the money for?
A standing frame called Standz, which with all the adaptations we need costs around € 3,100. It serves so that Mar is "on her feet" and thus obtain multiple improvements in her body, as well as strengthen her trunk .
At the end of your order you will be able to make a micro economic contribution destined entirely to the standing frame for Mar.
