A Pair Of Extra Hands

The project of the patient organization End Duchenne, called “A Pair Of Extra Hands” (2 ruce navíc) recently celebrated its first year. The significant contribution of the MDA RIDE played a crucial role in its establishment. 

End Duchenne is a patient organization that focuses on supporting and improving the lives of people affected by Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD). These rare genetic incurable disorders cause progressive muscle mass and strength loss. It is an incurable disease that can impact patients’ mobility and overall quality of life. They provide support to patients within mentor families and educate patients, caretakers, and doctors in the field of specialist care focused on DMD/BMD. They organize professional workshops and conferences and publish their own educational materials as well. Lukáš Bauer and Petr Urban are their patrons.

In the beginning, there were several families who needed urgent help … and the MDA RIDE, too. Also thanks to the support from the proceeds of last year’s MDA RIDE edition, this project could even be created and several very needy families could experience an absolutely wonderful year. In the pilot phase of the project, it was possible to provide socio-legal advice – such as support in writing applications to foundations – to children with this rare neuromuscular disease aged 7 to 18 and their families. Furthermore, they were helped in choosing compensatory aids or consultation with a physiotherapist and training in suitable rehabilitation techniques. Each pilot phase participant received a pulse oximeter, breathing trainer, tapes, or massage balloons. The families of the adolescent patients then received expert counseling in the area of non-invasive respiratory support, sexuality, and personal assistance.

The “A Pair Of Extra Hands” project was created with the aim of providing practical and emotional support to families living with Duchenne Muscular Dystrophy (DMD). This support is invaluable to the families, bringing them relief and hope.

Published by

Ladislav Poledna

MDA RIDE Committee member