About Duchenne Hungary
The Duchenne Hungary Foundation was established in November 2002, with the aim of coordinating the therapy of children suffering from Duchenne Muscular Dystrophy (DMD), SMA and other muscular disorders. The Foundation is a non-profit organization having its own budget: it has been supported by private individuals and companies in addition to the grants received from charitable organizations and the funds raised through regularly organized charity events. We truly believe that we can provide enormous support to families affected by DMD in managing their difficult life as described above. We have been organizing events for families 3-4 times a year since 2003. We have continuous relationship with more than one hundred Hungarian families, whom we provide with:
Our website is in the top3 ranking when there is a search for Duchenne in Hungary. We keep it up-to-date with all relevant information about the disease, our activities and links to peer-websites.
We represent a multidisciplinary approach: we have established working relationships with neurologists, cardiologists, pulmonologists, pediatricians, nurses, physiotherapists, masseurs, psychologists and lawyers. They regularly give presentations on the latest and best available treatments and means of care and other relevant developments. These professionals are also aware of the applicable regulations when handling issues with schools and other institutions as well as training opportunities for helpers. Some of our supporters provide services at our events.
We also provide a continuous medical training for our volunteers to make them qualified for working with DMD patients.
Psychological, emotional support
We build and strengthen the Hungarian DMD community by providing a platform for regular contacts, sharing experiences, challenges, achievements and by creating opportunities for joint activities, many of which became reoccurring over the years. At our seasonal events and camps we release the daily burden of family members and other helpers for a couple of hours or days with the assistance of our volunteers.
We provide opportunities for fun that otherwise could never be experienced due to financial or social circumstances of the families; art, adventure, sport and free time activities are arranged for them, like horse-back riding, bob-“flight”, motor boating, driving quads or sport cars and wellness programs, etc.
There are hundreds of photos on our Facebook page, which reflect the positive mood of our events.
Financial support and access to social aids
We provide all the above mentioned services for Duchenne boys free at our events. We also cover expenses of medical services (remedial massage, physiotherapy) for a whole year for some patients and subsidize the purchase of certain medical device.
We monitor the publication of any related tender for funding or social aid. We are aware of all available social support in the country, and we immediately communicate these opportunities to families alongside with know-how on filling in applications and applying for such funding (state aid, car allowance, subsidies for purchase of medical device, etc.)