The Association Conquistando Escalones is formed by a family that for more than 8 generations suffers a rare disease denominated Limb-girdle Muscular Dystrophy 1F. It has recently been discovered that the genetic mutation that causes it to us, also immunizes us against HIV and with research funded by us it is sought a cure not only for our family, but for millions of people.
Today, February 28, World Rare Disease Day is celebrated and for that reason, we have joined the topic of this year to emphasize the importance of research and the motto of FEDER (the Spanish Federation of Rare Diseases) “Research is our hope”. And we do it in this video, where we talk about it, about our disease and the ongoing research, with the appearance of some of the groups of researchers who work with us.
Remember that there is a crowdfunding campaign supported by the Government of Spain that has already got 9000 euros and aims to reach 25,000 to be able to pay a significant part of the research project led by Dr. Alcamí, director of the Unit Of Immunology of AIDS of the National Center of Microbiology of the Institute of Health Carlos III (ISCIII in Spanish) of Madrid: https://www.precipita.es/proyecto/el-tratamiento-de-una-enfermedad-muscular-rara-la-lgmd -1f-mas-cerca-gracias-al-vih.html