Duchenne Hungary joins World Duchenne Organization
The Gyógyító Jószándék Alapítvány – Healing Goodwill Foundation – Duchenne Hungary is a non-profit organization. Their aim is to support all children and families with Duchenne and Becker Muscular Dystrophy in Hungary. Their community unites more than 100 affected families. Today, it joined the World Duchenne Organization as WDO Full Member.
Dr. Gabriella Oberrecht is the Board of Trustee’s chairperson of Duchenne Hungary. She is an engineer. Her nephew was diagnosed with Duchenne Muscular Dystrophy when he was 3 years old. Together with her family, she then started the organization, which has been active since 2002. The Foundation is run by volunteers. In November and December, they celebrated the organization’s 20th anniversary.
Duchenne Hungary hosts fall, spring and summer camps, and other various events. Gabriella explains: “There are hundreds of photos on our Facebook page, which can accurately reflect the positive atmosphere of our events. Here, we raise awareness of Duchenne and Becker Muscular Dystrophy. Families in need have always been central: the foundation covers their daily expenses if necessary. Procurement of tools, equipment, financing for physical treatment are our own main tasks. We also provide families with social resources and psychological and emotional support. We provide a suitable environment, where families can connect, share common experiences, draw support and strength from each other.”
Next to support, the patient organization works closely connected with the clinical community. “We stand for a multidisciplinary approach. We work together with neurologists, cardiologists, pulmonologists, pediatricians, nurses, physiotherapists, masseurs, psychologists and lawyers. They regularly give presentations on the latest and best available treatments. These professionals are also aware of the applicable regulations when dealing with schools and other institutions. Also, we provide ongoing medical training for our volunteers to qualify them to work with DMD patients.”
In addition to support and care, Duchenne Hungary attaches great importance to the patient registry. Gabriella says: “Duchenne Hungary trains people to enter the relevant data and update it regularly. Our website is in the top 3 when searching for Duchenne in Hungary. We keep it updated with all relevant information about the disease, and our activities.”
As a member of the World Duchenne Organization, Duchenne Hungary looks forward to working together in the above topics. They are especially hopeful about the available therapies. Gabriella and the volunteers of the Foundation are convinced that together they can boost research – which can bring healing results closer.