{"id":73443,"date":"2025-04-14T08:04:25","date_gmt":"2025-04-14T08:04:25","guid":{"rendered":"https:\/\/ideatsg.com\/uncategorized\/solidarity-campaign-a-ray-of-light-for-helia\/"},"modified":"2025-05-05T13:29:15","modified_gmt":"2025-05-05T13:29:15","slug":"solidarity-campaign-a-ray-of-light-for-helia","status":"publish","type":"post","link":"https:\/\/ideatsg.com\/en\/uncategorized\/solidarity-campaign-a-ray-of-light-for-helia\/","title":{"rendered":"Solidarity Campaign: A Ray of Light for Helia"},"content":{"rendered":"

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Let\u2019s Make the Invisible Visible: Join the solidarity campaign and keep supporting research into Hereditary Spastic Paraplegia type 52<\/h2><\/div><\/div>[vc_column_text css=””]<\/p>\n

At IDEA, we have joined the fight to find a cure for SPG52, Hereditary Spastic Paraplegia type 52<\/strong>\u2014an ultra-rare disease that affects Helia, the young daughter of our colleague Domingo Vera and his wife Luisa. With only 55 known cases worldwide, this condition has no treatment and urgently needs funding to continue research. <\/p>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_custom_heading text=”What is SPG52?” font_container=”tag:h2|font_size:25|text_align:left|color:%23f6303e” google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:700%20bold%20regular%3A700%3Anormal” css=””][vc_separator color=”custom” style=”dotted” border_width=”2″ accent_color=”#cccccc”][\/vc_column][\/vc_row][vc_row][vc_column][vc_column_text css=””]<\/p>\n

Hereditary Spastic Paraplegia type 52 (SPG52) is an ultra-rare neurodegenerative disease that affects the central nervous system, specifically the upper motor neurons responsible for controlling movement and coordination<\/strong>. This progressive condition is caused by a mutation in the AP4S1 gene, which plays a key role in the intracellular transport of proteins essential for the proper functioning of the nervous system.<\/p>\n

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There are only 55 known cases worldwide, and just 3 in Spain\u2014one of them is Helia.<\/em><\/strong><\/p>\n<\/blockquote>[vc_column_text css=””]<\/p>\n

The genetic mutation causes a dysfunction in neuronal communication, leading to a progressive degeneration of the motor pathways. As a result, patients experience severe spasticity in the limbs, difficulties in movement control, cognitive development issues, and, in some cases, epilepsy<\/strong>. Additionally, this condition can impair the ability to speak, swallow, and perform voluntary movements normally. <\/p>\n

With only 55 recorded cases worldwide and three in Spain,<\/strong> SPG52 remains a little-studied condition, with no specific treatment and significant challenges in both diagnosis and therapeutic approach.<\/p>\n

[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_custom_heading text=”Solidarity Walk \u2013 25 May, Cartagena” font_container=”tag:h2|font_size:25|text_align:left|color:%23f6303e” google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:700%20bold%20regular%3A700%3Anormal” css=””][vc_separator color=”custom” style=”dotted” border_width=”2″ accent_color=”#cccccc”][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/4″]

<\/div>[vc_column_text css=””]We need your help to continue supporting the work of a research group at the Autonomous University of Barcelona<\/a><\/strong>, which is striving to find a treatment for this disease.
\nThe association A Ray of Light for Helia<\/a><\/strong> is organising its first solidarity event through a walk in Cartagena, Murcia<\/strong>, on 25 May, and we would love to have as many people as possible join this important cause.
\nWill you join us?[\/vc_column_text][vc_btn title=”Sign up here!” color=”danger” css=”” link=”url:https%3A%2F%2Flineadesalida.net%2Fcarreras%2Fruta-solidaria-un-rayo-de-luz-para-elia|”][\/vc_column][vc_column width=”3\/4″][vc_single_image image=”73593″ img_size=”full” style=”vc_box_shadow_3d” css=””][\/vc_column][\/vc_row][vc_row][vc_column][vc_custom_heading text=”Would you like to sponsor the solidarity walk?” font_container=”tag:h3|font_size:20|text_align:left|color:%23000000″ google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:700%20bold%20regular%3A700%3Anormal” css=””][vc_column_text css=””]If your company would like to support the solidarity walk, it can do so in one of two ways:[\/vc_column_text]