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We support this initiative by sponsoring this race and giving visibility to the project.
Nemaline myopathy is a rare congenital neuromuscular disease affecting the entire musculature of the body for which no treatment exists. Little research has been done on it, and for now there is no curative therapy, so let's learn more about this rare disease and its characteristics!
Nemaline Myopathythe rare disease that affects 1 in 50,000 people worldwide.
It is called a rare disease since it is estimated to affect one in fifty thousand people in the world. In Spain there are about 30 cases registered.
It is characterized by a generalized decrease in muscle tone that causes breathing difficulties, speech and swallowing impediments, motor difficulties, such as displacement, coordination of movements or skeletal structure problems.
The origin of the association, Yo Nemalíca
Yo Nemalínica is a non-profit association of national scope and declared of public utility. It emerged in 2015, when different affected families contacted each other and created a whatsapp group in order to support and create a point of union. A year later the association was constituted to the public.
The team is made up of 29 families who, on a daily basis, strive to disseminate and publicize the disease, thus achieving greater visibility in society. One of the main goals of the association is to seek investment for research, with the aim of improving the quality of life of those affected.
With this objective in mind, two years ago the project MYOCUREproject, carried out in collaboration with the Andalusian Center for Developmental Biology (CABD) of the Pablo de Olavide University (UPO) in Seville and approved by the CEI of the Virgen Macarena and Virgen del Rocío Hospitals in Seville. The research project is based on "Precision Medicine", the aim is to achieve an effective and personalized treatment for each patient through the search for therapies with existing drugs that can be a therapeutic option.
A rallying point for affected families
The association is also intended as a meeting point for those affected and their families, thus making the struggle less isolated. The number of known cases was very small, but little by little they have begun to mobilize more and more.
The association helps families to contribute their own experiences and learn from those of other families. This information is of great value to them, as there are so few cases of people affected by Nemalinica in Spain, and medical experience is quite limited.
Sharing discoveries, ideas or simply statements of past experiences with people who are in the same circumstances as them, helps them to empathize and feel understood. Every year, the association organizes a meeting of families to be able to share all these experiences in first person. This year the meeting will be held in Burgos, where the Ministry of Equality has provided its facilities for this event.
"What gives us the most is the experience of other families, many of whom have already had a longer journey than yours, or have gone through experiences that you have not yet gone through and vice versa, and by sharing it we help and support each other. One head does not think the same as 29. Every year we have a family meeting. It is a way for the children to see each other with their peers, with other children who have the same pathology. Seeing each other at these meetings helps us to empathize and feel understood, since we are better understood by someone in the same circumstance" José Manuel Palomo (President of the association).
42 kilometers through the Nemalinica, March 26th
Next Saturday, March 26, the race "42km for Nemalínica" will be held in Alcalá de Guadaira, a solidarity marathon to give visibility to this rare congenital neuromuscular disease.
From Eurotex we support the initiative in order to add to the research of the MYOCURE project, thus improving the quality of life of those affected,
The objective of the association is to raise funds through this race. If you are interested in participating or you want to do your bit, you can help the association through their website.