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The International Dravet Syndrome Awareness Day marked by Enel’s City of Energy project

Enel Romania together with The Association for Dravet and other Rare Epileptic Syndromes have marked the International Dravet Syndrome Awareness Day by inaugurating a substation painted by urban artists with the “Dravet Superhero”, a character designed by an 8 year old girl whose friend is afflicted by this rare and severe type of epilepsy.

The “Dravet Superhero” will also be the star of a children’s story book that the Association for Dravet currently is fundraising for, in order to help children understand the difficulties of living with epilepsy, as well as to offer encouragement and support for children who are affected by this syndrome or other epilepsies.

Until the book is released, the “Dravet Superhero” tells a compelling story in images on the walls of an Enel primary station placed in District 4, Bucharest, close to the “There is Hope” day care center that Enel and The Association have inaugurated in December last year. The center is the first preschool facility in Romania specialized for children with epilepsy, following a grant awarded by the company and Enel Cuore, the Group’s NGO. Within the center, children with epilepsy – whose access to traditional kindergartens and preschool units is usually limited – benefit from education and therapies. Parents of children enrolled within the center have access to networking sessions so that they can create a powerful group of facilitators aimed at changing the restrictive conditions for access to education for children suffering from epilepsy.

The unit can host 20 children for the day care program, which includes customized therapies, and another additional 20 children can take part in speech therapy, physical therapy, psychological counselling, occupational therapy, sensorial stimulation, art therapy etc. The center also provides for 10 places for children coming from underprivileged families (5 for the day care center and 5 for the therapies center), whose related cost is entirely covered by Association for Dravet and Other Rare Epileptic Syndromes. “There is Hope” Day Centre is located inside Ominis building, a complex of units supported by the Social Assistance Direction within the Bucharest City Hall, in the Capital’s District 4.

“Today’s substation inauguration is part of the City of Energy project developed by Enel in Romania for the 5th year in a row, which contributes to improving and changing cities where we live in places full of colors and energy, by offering its substations as support for urban art. Following the model implemented with great success by Enel in Spain, the City of Energy project has proved to be a real success in Romania and was welcomed with great enthusiasm by the urban community. Representatives of this community had the chance to leave their print in different areas of Bucharest, Timisoara and Constanta, by changing Enel’s substations into modern works of art or even public statements in support of various causes such as the conservation of wildlife in Dobrogea and, now, Dravet Syndrome Awareness Day,” a press release issued by Enel shows.

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Active on the Romanian market since 2005, Enel is currently the country’s largest private investor in energy, with operations in power distribution and supply as well as renewable energy production. The company has more than 3,100 employees and provides services to 2.7 million customers in three key areas of the country: Muntenia Sud (including Bucharest), Banat and Dobrogea, accounting for one third of the electricity distribution market in Romania.

 

About the Association for Dravet and other Rare Epileptic Syndromes

 

The Association for Dravet and other Rare Epileptic Syndromes was founded in 2012. The association’s long-term projects include supporting and counselling families, a better access to new generation medicines, increasing awareness on rare forms of epilepsy, by organizing events and conferences.

Approximately 60 children in Romania are known for suffering of Dravet Syndrome, but the disease is under diagnosed, due to the lack of information and testing funds.

More details about the association’s projects are available on www.dravet.ro.

 

About epilepsy and Dravet Syndrome

 

In Romania, some 200,000 patients suffer from epilepsy, according to World Health Organization, however physicians believe that their number is higher, from 300,000 to 500,000. Between 50 and 60 percent of the epilepsy cases begins before the age of 16 years, a unique accidental seizure that could appear to 5% of the population.

 

 

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