Solidarity Campaign: A Ray of Light for Helia

At IDEA, we have joined the fight to find a cure for SPG52, Hereditary Spastic Paraplegia type 52—an 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.

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. 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.

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. Additionally, this condition can impair the ability to speak, swallow, and perform voluntary movements normally.

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

We need your help to continue supporting the work of a research group at the Autonomous University of Barcelona, which is striving to find a treatment for this disease.
The association A Ray of Light for Helia is organising its first solidarity event through a walk in Cartagena, Murcia, on 25 May, and we would love to have as many people as possible join this important cause.
Will you join us?

If your company would like to support the solidarity walk, it can do so in one of two ways:

If you’d like to join this solidarity campaign beyond taking part in the walk, here are some ways you can contribute:

Every contribution, no matter how small, makes a difference and helps us move forward with this cause.

Share this initiative both within and outside your company to help it reach more people and make a greater impact. Visit their website, A Ray of Light for Helia, and follow them on social media to stay informed and support the cause.

Chaque pas compte dans la lutte contre la SPG52. Avec votre soutien, nous pouvons donner de la visibilité à cette maladie ultra rare et, surtout, faire avancer la recherche vers un traitement. Que ce soit en participant à la marche, en devenant sponsor, en faisant un don ou en diffusant la campagne, chaque geste compte et nous rapproche d’un avenir meilleur pour Helia et pour d’autres enfants confrontés à cette condition.

Ne laissons pas la SPG52 rester invisible. Rejoignez cette cause et aidez-nous à offrir de l’espoir à ceux qui en ont le plus besoin. Nous comptons sur vous !