The Children’s Joy Association is committed to standing for patients with Dystonia and is a member of the National Alliance for Rare Diseases being a part of its Board. Some forms of neuromuscular Dystonia are considered rare diseases and the association plays an active role in supporting patients and raising awareness about these conditions.
In this context, Children’s Joy Association organized a series of events aimed at highlighting the challenges faced by people affected by rare diseases, including two painting exhibitions, a psychology workshop, and participation in the Rare Disease Day National Conference in Bucharest.
The Painting Exhibitions – A Bridge Between Art and Awareness
The association organized two unique painting exhibitions:
– “Captive in My Body” – 7th edition
– “I Can – More Than You Can Imagine”
The works on display were created by local artists from Timișoara, each interpreting the theme of rare diseases through diverse styles and techniques. The painting exhibitions, first held at the Banat Museum in Timișoara, then at Bastion No. 3 with the support of the Municipality of Timișoara through the “Spaces for the Community” program. The second exhibition, “I Can – More Than You Can Imagine,” also included a psychology workshop as part of the exhibition.
The Psychology Workshop – “I Can More Than You Can Imagine”
The workshop was led by Cătălina Crainic, President of the Children’s Joy Association, clinical psychologist, and a patient with cervical dystonia, and Assoc. Prof. Dr. Amalia Loredana. The main theme was identity and change among people affected by Dystonia or other rare diseases. Students from Tibiscus University in Timișoara participated in the event under the coordination of Assoc. Prof. Dr. Amalia Loredana Marinca, a representative of the Tibiscus University Research and Study Center, as well as neuromuscular disease patients who shared their individual experiences and challenges. The workshop was a great success, offering participants a valuable learning experience and an exchange of perspectives.
A Key Moment: Participation in the Rare Disease Day National Conference
Another important moment was the participation in the Rare Disease Day National Conference held in Bucharest on February 28, 2025. At the conference, Cătălina Crainic was a speaker in the awareness and inspirational stories panel where she presented the rehabilitation program through sports and psychological counseling conducted in collaboration with MC Gym Motion. This program provides movement, recovery, and emotional support opportunities for people affected by neuromuscular Dystonia and other neurological diseases. MC Gym Motion offers an adapted environment for physical rehabilitation and psychological support activities, aiming to improve patients’ quality of life. Discussions in the panel emphasized the importance of physical activity and psychological support in managing these conditions, showing that an integrated approach can bring significant benefits to patients. Through these initiatives, the Children’s Joy Association has contributed to raising awareness of rare diseases and the need for support for patients. The organized events showed that art, movement, and psychological support can become powerful tools for integration and recovery.
The Children’s Joy Association aims to continue these actions, providing people affected with resources, support, and inspiration for a better life.
