Virginia Barcones attends the opening ceremony of the VI Rastrillo in favor of the European Association against Leukodystrophy in Spain

• Leukodystrophy is a rare disease characterized by progressive degeneration of brain white matter due to imperfect growth or development of myelin • Affects one in 7,500 people and 95% of those affected are children

September 30, 2023.- The delegate of the Government in Castilla y León, Virginia Barcones, has attended the opening ceremony of the VI Rastrillo in favor of the European Association against Leukodystrophy in Spain, a rare disease of which there are cases detected in Castilla y León.

Virginia Barcones has been present at the inauguration of a Rastrillo whose goal is to raise funds for research on the disease and help families with sick children.

During the event, Virginia Barcones was accompanied by the Subdelegate of the Government in Valladolid, Alicia Villar. Also present at the presentation were the father prior of the Community of Augustinian Fathers of Valladolid, José Vidal; the president of the European Association against Leukodystrophy, Carmen Sever; as well as other institutional and religious authorities as well as relatives and partners of the Association.

The president of the European Association against Leukodystrophy in Spain, Carmen Sever, has explained that it is a disease characterized by progressive degeneration of the white matter of the brain due to the growth or imperfect development of the myelin sheath. It affects one in 7,500 people, 95% of whom are children. “We are talking about a few thousand people who may have leukodystrophy in Spain,” said Sever.

The European Association against Leukodystrophy in Spain was born in 2001 with the aim of helping families affected by the disease and in this time has achieved that there is “a gene treatment for three types of leukodystrophy”, and that pharmacological or palliative treatments have been improved.

In this regard, Carmen Sever has recognized that one of the urgencies of her Association is that those affected are diagnosed in time since gene treatment has a “very small” therapeutic window. “Once the degeneration has begun, they do not have the desired effect,” added the president of the Association.

For this reason, they request that neonatal screening be done to detect the three most prevalent forms of this rare disease: Adenoleukodystrophy; Krabbe Leukodystrophy and Metachromatic Leukodystrophy. “This would save children who might have the disease. It is not that their quality of life improves, it is that it would be the difference between living or dying”, said Sever who added that, depending on the variant of the disease, there are multiple symptoms that can affect sick children.

For her part, Virginia Barcones has pointed out that when you have a child, it is expected that the child will be healthy. When this is not the case, he has stressed the importance of associations that, like the European Association against Leukodystrophy in Spain, “accompany family members”.

The government delegate has stressed that research is “fundamental” to stop diseases that have not been treated so far as well as to create treatments that improve the quality of life of patients and families.

Virginia Barcones has advocated to open up the social range of care for patients and families to improve the quality of life of people suffering from this type of rare disease. “Because they are rare diseases, they deserve more attention,” he said, calling on the institutions to do so.

In this sense, he has asserted that his presence and that of the subdelegate of the Government in Valladolid, Alicia Villar, in the Rastrillo has the objective of “giving visibility to the disease” and helping to the extent of “our possibilities, to the extent of our competencies, to continue taking steps so that the disease is diagnosed as soon as possible”.

During VI Rastrillo Benéfico, which is biennial, there are creative workshops, the performance of the illusionist Alejandro de las Heras López, an exhibition of detector dogs in charge of the Cinological Teams of the Spanish Army, a fencing workshop in charge of the Fencing Club ‘El Duque’ of Medina del Campo, and the performance of the choir of the Municipal School of Music of Valladolid ‘Marian de las Heras’

At the opening ceremony, Virginia Barcones was accompanied by the government’s deputy delegate in Valladolid, Alicia Villar. Also present at the presentation were the father prior of the Community of Augustinian Fathers of Valladolid, José Vidal; the president of the European Association against Leukodystrophy, Carmen Sever; as well as other institutional and religious authorities as well as relatives and partners of the Association.