The Neuromuscular Disorders Association of Turkey (KASDER) recognized those with Duchenne muscular dystrophy may face difficulties, such as a limited social life, dependency on home care, and challenges accessing the same opportunities as their peers. Accepting and coping with this kind of neuromuscular disability and the hardships that come with it may often lead to anxiety and depression.
The organization responded to this problem by setting up a free online psychological support system for Turkish-speaking individuals with Duchenne around the world. The virtual and complimentary nature of the program means that patients and their families can take part in individual and group sessions from their home, ensuring that transportation issues, public health risks, and economic status do not prevent them from receiving the support they need.
As second-time recipients of the STRIVE grant, KASDER has provided psychological support services for eight years. They have been working to expand the project to provide more than 1,500 annual support sessions to 50 people living with Duchenne. They will also train an additional 30 psychologists on how to best support people with Duchenne. Both patients and psychologists will be able to take part in the sessions through their personal smart phones via Zoom, keeping the program accessible and supportive.
Recent events led KASDER to pivot and expand its program to meet the needs of the community. On February 6, 2023, catastrophic earthquakes rocked Turkey. More than 50,000 lost their lives and hundreds of thousands of Turkish citizens were injured in the Kahramanmaraş-centered earthquakes.
KASDER’s next goal with the 2022 STRIVE grant is to expand services to earthquake victim muscle patients and their relatives through the Online Psychological Support Project. KASDER’s main goal is to provide psychological support to individuals with muscle disease and their relatives living in 11 provinces affected by the earthquake and who were forced to relocate. The organization plans to provide training on post-traumatic stress disorder to volunteer psychologists under supervision.
We reached out to KASDER to find out how the STRIVE grant has helped their project and what some of the highlights have been since receiving this funding. They said the grant has allowed them to provide supervision training to volunteer psychologists two days a week and their therapists’ support to individuals with muscle disease and their families has moved to a different dimension! It has also allowed them to introduce their organization and projects in many new locations, expanding their reach. Many therapists and new clients have reached out to the organization asking to be included. The grant has had a lasting impact.
KASDER TeamMeeting new clients, new therapists and specialists, and observing their increased awareness of neuromuscular diseases was one of the most important and impressive events. Because neuromuscular diseases are unfortunately not very well known and we support new people and increase their awareness thanks to this project!