{"id":23777,"date":"2020-11-04T12:23:09","date_gmt":"2020-11-04T11:23:09","guid":{"rendered":"https:\/\/test.impulsate.org\/?p=23777"},"modified":"2020-11-05T11:17:14","modified_gmt":"2020-11-05T10:17:14","slug":"24-people-in-spain-affected-by-congenital-muscular-dystrophy-due-to-merosin-deficiency-join-forces-your-impulse-makes-us-fly","status":"publish","type":"post","link":"https:\/\/test.impulsate.org\/en\/24-people-in-spain-affected-by-congenital-muscular-dystrophy-due-to-merosin-deficiency-join-forces-your-impulse-makes-us-fly\/","title":{"rendered":"The 24 people in Spain affected by congenital muscular dystrophy due to merosin deficiency join forces: “Your impulse makes us fly”"},"content":{"rendered":"

On the occasion of the 15N, World Day of Neuromuscular Diseases, families remember that research in rare diseases is negligible. Only collective involvement can help improve the lives of those affected. <\/span><\/span><\/strong><\/p>\n

Most boys and girls with merosin-deficiency congenital muscular dystrophy cannot walk or eat alone, although their intellectual development is not affected.<\/strong> <\/span><\/span><\/p>\n

The ImpulsaT association, the speaker of 24 people affected by merosin deficiency congenital muscular dystrophy in Spain, starts the campaign “Your impulse makes us fly” within the framework of the 15N, World Day of Neuromuscular Diseases. <\/span><\/span><\/p>\n

Its objective is to make known a minority disease that affects the muscles but not the cognitive capacity, thus, the majority of children who suffer from it cannot walk or eat alone, although their intellectual development is not affected. As it is a disease that affects 1 in 100,000 children, very few resources are devoted to biomedical research and it is only private involvement that can help improve the quality of life of these people. <\/span><\/span><\/p>\n

The Covid19 pandemic greatly aggravates the situation of these families. On the one hand, because the affected people are at high risk and must reduce social contact, and therefore also support for families to coexist with the situation (school, leisure, relatives, specialists, …). On the other hand, because they have had to stop all the solidarity initiatives to raise funds that helped them finance the two open lines of research. <\/span><\/span><\/p>\n

Thus “Your impulse makes us fly” is a call for solidarity to raise funds for research on congenital muscular dystrophy due to merosin deficiency through donations to test.impulsate.org<\/a> and awareness activities about the disease: <\/span><\/span><\/p>\n

Wednesday, November 11. At 6pm online via Jitsi Meet <\/span><\/span><\/strong><\/p>\n

Webinar. What is merosin deficiency muscular dystrophy? What are the main lines of research in Spain?<\/em> with <\/span><\/span><\/p>\n