The 24 people in Spain affected by congenital muscular dystrophy due to merosin deficiency join forces: “Your impulse makes us fly”
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.
Most boys and girls with merosin-deficiency congenital muscular dystrophy cannot walk or eat alone, although their intellectual development is not affected.
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.
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.
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.
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 impulsate.org and awareness activities about the disease:
Wednesday, November 11. At 6pm online via Jitsi Meet
Webinar. What is merosin deficiency muscular dystrophy? What are the main lines of research in Spain? with
- Laura Coch. PhD in Biomedicine from the University of Barcelona and Bachelor of Biotechnology from the Autonomous University of Barcelona.
- Anna Tuset. Graduated in Pharmacy from the University of Barcelona. Specialized in Clinical Research with special interest in observational studies.
Free registrations at https://forms.gle/swqBHiN7f6GU4eYS6
Saturday, November 14. At 11am online via Jitsi Meet
Online solidarity action. Children’s stories to fly, with
- Anna Roca. Storyteller of exciting, tender and funny stories since 1996 – annaroca.com
Registration at https://forms.gle/swqBHiN7f6GU4eYS6. You are invited to make a donation at ES97 2100 4815 2322 0004 1516 (CaixaBank).
Sunday, November 15
Together we will blow up people with merosin deficiency muscular dystrophy. Stay tuned to our social networks @ImpulsaT_Lama2.
Currently, the association has accompanied two research projects, thanks to the guidance of the Scientific Committee of the ImpulsaT association and the support of companies, institutions and private donations.
- Development of a new pre-clinical gene therapy strategy for the treatment of congenital muscular dystrophy 1a.
- Uni-large: development of a new gene therapy technology to treat congenital muscular dystrophy type 1a.