114 people gathered for ELA Spain’s respite weekend

From 25 to 28 September, 36 families gathered at the Real Colegio PP Agustinos for their 21st national gathering. This event was made possible thanks to funds raised by ELA International during the “Watches for ELA” charity auction in 2024.

The families were welcomed in the lobby of the Hotel Zentral Parque. Welcome groups gave participants the chance to get to know one another, before everyone was free to spend the evening settling in or chatting with others affected by the condition.

Friday began with a lecture by D^r Laura García Miralles on the management of pain and symptoms in patients with leukodystrophies. This was followed by a practical nursing workshop led by Cristina Agüera Martín, a specialist nurse. After a cultural break at the Oriental Museum, the participants enjoyed an al fresco lunch in the gardens of the Real Colegio.

The afternoon was dedicated to the ComunicARTE programme, which combines emotional support with artistic rehabilitation. The evening featured a concert by the choir of the Mariano de las Heras Municipal School of Music in the Church of San Agustín, followed by a convivial dinner.

On Saturday morning, the focus was on nutrition: D^r Juan José López Gómez gave a talk on nutrition for people with dysphagia, followed by a workshop led by nutritionist Cristina Marciales García. A group photo marked the official opening of the charity market in aid of ELA Spain. Participants then watched a demonstration by the army’s detection dogs. In the afternoon, the day’s programme included the launch of the book “Carolina Purpurina”, a fencing workshop and a paso doble concert. Meanwhile, families were able to speak with specialists (in paediatric neurology, neurology and research) during individual consultations.

This event helped to strengthen ties between families, healthcare professionals and local organisations, whilst providing an opportunity to share meaningful personal and cultural experiences.