Every February 28, World Rare Disease Day is celebrated, with numerous activities and initiatives taking place around the world in order to give this community a voice. And to support the need to raise awareness about rare diseases, their challenges and needs, the Asociación Conquistando Escalones has created a campaign by the audiovisual communicator Ylenia Ramos, who is a member of the Association and is also affected by Limb-girdle Muscular Dystrophy 1F/D2.
Ylenia has told through the social networks of Conquistando Escalones and in different “chapters” accompanied by images, how she has lived the disease since her childhood. Now 23 years old, she recounts her feelings when she saw how the disease evolved in her maternal grandfather, Andrés Guirao; in her cousin, Abrahán Guirao, or that she felt upon discovering that she herself had the disease.
You can see these stories on our networks:
Also today, the president of the Association, Abrahán Guirao, will maintain on his Twitch channel (https://www.twitch.tv/turbolover1984) with Juan Carlos Unzué, former player and former soccer coach and now affected by ALS. This meeting, which will take place at 7:00 p.m., will mark the culmination of the “celebration” of World Rare Disease Day and will be done precisely with a conversation between two people who intend to give visibility to this type of diseases and who want to underline the importance of research.
You can donate to the solidarity campaign associated with the channel and whose funds are full for medical research on Limb-girdle Muscular Dystrophy 1F/D2 at this link: https://tiltify.com/@turbolover1984-2e50d0/luchando-por-la-conquista-de-escalones