502,000 CZK for the Parent Project
29. January 2017
The Parent Project is a non-profit organization of parents and relatives whose children were born with Duchenne/Becker muscular dystrophy (DMD/BMD). The organization was founded in the USA in 1994 and officially registered in the Czech Republic in 2001. Its mission is a financial support of the DMD/BMD muscular dystrophy research, to improve a primary care and quality of life of patients and to promote an integration. It has been financed a lot of smaller as well as larger projects from this year's donation of 502,000 CZK.
So for example, the already 4th edition of the integrated boccia tournament took place in Nová Paka thanks to the contribution of 30,000 CZK. And also this time, the group of MDA RIDE supporters has participated in the integrated boccia games (called iBoccia) alongside the guys from the Parent Project. All the times, it starts with matches in the groups, and then after lunch, the fierce play-offs are underway. Well, it is certainly no piece of cake even for hard bikers to play against our 1st league stars like Pepa Suchý and Adam Peška :)
Thanks to the sum of 30,000 CZK, it was possible to organize the annual summer camp for mothers with children, for some reason called Ladies' Party :) - this time in Hodonín u Kunštátu. Another 20,000 CZK has helped to adopt the global Word Duchenne Awareness campaign again aiming to get important information on this serious disease to the attention of professionals and the general public. The 7th September was announced to the World Duchenne Awareness Day as a joint initiative of the United Parent Project Muscular Dystrophy and other organizations around the world.
We could also contribute 60,000 CZK to 3 other Parent Project activities (a nationwide meeting, web site operation and an annual reconditioning camp for families with small children) as well as 380,000 CZK to 20 individual Parent Project members for necessary devices and equipment.
The muscular dystrophies are genetic diseases which are manifested as a progressive muscle weakening. Individual muscular dystrophy forms are of various progress. The Duchenne muscular dystrophy (DMD) is the most common and the most cruel form. This disease occurs in a population at approximately 1 for 3,000 boys born. The milder form, the Becker muscular dystrophy (BMD) occurs at about 1 out of 18,000 boys born.