“For many parents of Duchenne patients in Hungary, these events provide a trusted environment where they can share their concerns, and experience a few well-needed hours of respite as their child takes part in many fun activities with their peers.” – Dr Gabriella Oberrecht, Chairperson of the Board, Healing Goodwill Foundation – Duchenne Hungary
Receiving a diagnosis for a rare disease such as Duchenne muscular dystophy can often leave families feeling isolated, with their questions about the challenges that lie ahead left unanswered. Many families find it increasingly difficult to find appropriate, accurate and up-to-date information that addresses their specific medical, legal, financial or social concerns.
The Healing Goodwill Foundation – Duchenne Hungary, established in 2002, recognizes that patients and their carers are often keen to speak to professionals with the right expertise and knowledge, but don’t know where to turn. The Foundation acknowledges the importance of establishing a safe space where families can connect, share common experiences and draw support and strength from each other.
As a result, the Foundation established the ‘You Are Not Alone’ (YANA) initiative. As part of this initiative, seasonal events for Duchenne families are held throughout the year, during which multidisciplinary healthcare professionals deliver presentations to educate patients and families on the treatments and therapies available, as well as the latest developments in Duchenne care. In October 2020, they held a much-anticipated YANA away day, however once the pandemic hit, they had to change their plans to ensure their community was connected and supported online. They hosted a number of virtual meetings, concerts and quiz games to lift the spirits over the winter months. Despite the pandemic, the Foundation provided over 400 hours of physiotherapy and psychological support through digital materials, instructional videos, virtual consultations with physiotherapists and psychologists.
In these relaxed environments, many families have felt at ease sharing their experiences of living with a rare disease diagnosis – helping and supporting each other as they navigate this unique but also shared emotional journey. In addition, the events also provide a much-needed boost to the wellbeing of Duchenne patients, by organizing fun activities rich in peer-to-peer interaction, ranging from boating to sportscar driving to crafts. As well as connecting Duchenne families and patients together, these events also provide a springboard to raise awareness of Duchenne to the wider community.
“For many parents of Duchenne patients in Hungary, these events provide a trusted environment where they can share their concerns, and experience a few well-needed hours of respite as their child takes part in many fun activities with their peers.”
Dr Gabriella Oberrecht, Chairperson of the Board, Healing Goodwill Foundation – Duchenne Hungary