“With so many individuals providing care to their child alone, without professional help, the ‘Not Alone’ initiative, made possible by the STRIVE program, will provide an invaluable support system to families impacted by Duchenne muscular dystrophy.” – Margarita Urmancheeva, President, GAOORDI
Due to a lack of funding, only a few specialist care facilities for Duchenne muscular dystrophy patients exist in Russia. Without a comprehensive support network, both children with Duchenne and their families can feel isolated. For parents in particular, this lack of external support can often result in them having little time for self-care, or the space to process their own anxieties and concerns.
The Association of Public Organizations of Parents of Children with Disabilities, otherwise known as GAAORDI, is a network of 18 unique patient organizations in Russia, each of whom supports children with disabilities and their carers. The network includes the Sirius Foundation, which specifically supports the parents of children with neuromuscular diseases, such as Duchenne.
Winning the STRIVE Award has enabled GAOORDI to work in collaboration with the Sirius Foundation to deliver a comprehensive program, called ‘Not Alone’, to Duchenne patients and their carers in the St Petersburg region of Russia. The program focuses primarily on the emotional challenges that living with a rare disease can bring. Through the program to date, they have delivered seven support meetings with ~15 Duchenne carers and patients attending. These meetings provided a space to discuss their shared experiences and support each other’s psycho-emotional wellbeing. Thirteen parent carers have been able to access professional hydrotherapy sessions for their children to enjoy outside of their home and over 2,500 hours of short-term respite care for adults with Duchenne has been provided to give caregivers a well-deserved break.
To complement the psychological aspect of the program, GAOORDI will also provide comprehensive educational, practical, and professional support to families. A short, tailored film will be developed for Duchenne parent carers, which will cover the basics of home care techniques that can be implemented to prevent limb contractures and improve respiratory function in Duchenne patients. They are looking forward to launching this in September 2021.
“With so many individuals providing care to their child alone, without professional help, the ‘Not Alone’ initiative, made possible by the STRIVE program, will provide an invaluable support system to families impacted by Duchenne muscular dystrophy.”
Margarita Urmancheeva, President, GAOORDI