WHO ARE WE?
ACE – Association Conquistando Escalones. Non-profit association, founded by affected of the LIMB-GIRDLE MUSCULAR DYSTROPHY 1F -LGMD1F, their relatives and friends.
WHERE WE COME FROM?
Our disease affects our ordinary life causing heavy restrains. Is degenerative, starts decreasing our motor skills and ends jeopardizing our breathing ability and our cardiac functions, bringing us to death. Also, it is a hereditary disease: there has been identified more than 8 generations of affected.
WHERE ARE WE GOING?
For this reason and for the fact that the research has done lots of advances we have founded this association, as we need to raise funds for carry on the ongoing investigations in order to find a cure for this disease and other neuromuscular diseases as well.
The name of the Association is in Spanish, as the biggest part of the affected lives in Spain, but the meaning is this: “Conquering Steps”. The idea came from the fact that our life as affected of muscular dystrophy, among so many other things, is full of stairs: one of our first symptoms is, indeed, the one of showing difficulties to climb stairs. The course of the disease is characterized by a degenerative process which carries us to a wheelchair, and finally, when the internal organs are injured, to death.
However, we have chosen the name “Conquistando Escalones” because the message that we want to spread is positive, as step by step, stair by stair, we will conquer the top of the mountain, finding the cure for our disease and for many other similar pathologies.
In the collective imagery, if a disease doesn’t have evident symptoms, it seems like it is not as serious as others and we are often forced to stand this indifference that judges us. If someone doesn’t find himself on the final stages of the disease, it would seem like you are not really affected from a physical disability that seriously compromises our health and our lives.
The difficulties begin when you are a child, you see that your friends are running, jumping, playing, having fun and you can’t do nothing but stay in a corner watching them. Your head tells you to go playing and have fun, but your muscles don’t allow it.
Little by little you begin to have difficulties to climb stairs; you hold the hand railings, which you cannot climb stairs anymore, but one day this doesn’t works neither, anymore, and you need strong arms to hold you and to carry you through all the steps that life puts in front of you.
You stumble, fall down, and remain in the floor, waiting for someone to come and lift you up… Your body will be standing again, but your soul, fall by fall, will have to do every time a bigger effort to lift up.
You fall down once, twice, thousands, until you don’t have no option but to remain in a wheel chair and see life through another perspective.
It starts to be harder for you to breath, you have difficulties to swallow, you realize that your body can’t follow the rhythm of your mind, and you finally forget what means combing, get dressed, eating, go to the bathroom, clean yourself. You have no more your autonomy and your liberty.
You start to see your time as wall that runs behind you, and you can’t escape from. You are lucky to see that around you there are relatives that are still much better than you, but unfortunately there are also others that are turning off, they salute you for the last time and leave you forever. And if there’s something more difficult than see your family and friends leave you because of this disease, is to be so closed to the cure and cannot reach it because of a lack of money.
Since the discovering in 2013 of the gene that causes it, there are several investigations in progress to find the cure, finding out also that the protein affected is the one that transports the AIDS. The mutation of this gene gets the affected immunized to AIDS and makes us be the entrance gate to a possible cure for this global pandemic. Also, regarding the complexity of our type of muscular dystrophy, the investigators assure that finding the cure will carry with it the solution for lots of other similar myopathies.
For this reason, we ask for your help to stop a disease which affects nowadays to 8 generations, attacking the next in a more virulent and cruel way than the previous. Furthermore, with your support, we would help million people all around the world.
If there’s something more difficult than see your family and friends leave you because of this disease, is to be so closed to the cure and cannot reach it because of a lack of money.
Our Association is constantly searching for funds and visibility with the aim of achieve the final objective which it was made for: to have the chance of continue these investigations and dispose a better future for millions of people.
The push for us to create this association was given to us when we saw that, thanks to the benevolence of some doctors and investigators, who in turn have stimulated and involved other labs and doctors that since now were not aware of our existence, advances are being done in the knowledge of our disease and for a possible future therapy. But due to the lack of funds, and regarding the historical moment that we are living, all this efforts could be done in vain.