Will raise funds to support clinical trials and facilitate access to targeted therapies for children with ultra-rare diseases
The solidarity festival RenHacer will celebrate its fourth edition from September 6 to 14 in Arantzazu (Gipuzkoa), Bilbao, and Logroño, with the purpose of raising funds to support the CTNNB1 Association, a non-profit organization that works to provide support to families and promote research on this rare disease.
The RenHacer Festival, presented on Tuesday in San Sebastián, aims to raise funds to support clinical trials and facilitate access to gene therapies for children with ultra-rare diseases.
This edition will support the CTNNB1 Association, which is collaborating with the CTNNB1 Foundation to kick off the first clinical trial in 2025 for this genetic mutation currently affecting five children in the Basque Country and 35 nationwide.
According to the festival organizers, it is a rare and severe neurodevelopmental genetic disorder caused by mutations in the CTNNB1 gene located on chromosome 3p22.1. Symptoms include global developmental delay, mild to profound intellectual disability, speech delay or absence, axial hypotonia and limb spasticity, microcephaly, visual problems, behavioral disorders, feeding difficulties, and motor delays.
The festival will be directed by maestro Ramón Tebar and will feature Verdi’s ‘Requiem’ as the central piece. The performance will be by the Orfeón Donostiarra, the Bilbao Symphony Orchestra (BOS), soprano Miren Urbieta-Vega, mezzo-soprano María José Montiel, tenor Jonathan Tetelman, and bass George Andguladze.
The festival will visit Riojaforum (Logroño) on September 11, the Sanctuary of Arantzazu on September 13, and the Euskalduna Bilbao on September 14. A preview concert will be held on September 6 at the Orfeón Donostiarra rehearsal hall in the capital of Gipuzkoa. Additionally, a symposium on funding rare diseases will take place on September 12 in the capital of Vizcaya. Tickets are available on the website fundacioncolumbus.org.
RARE DISEASES
Javier García, secretary and trustee of the Columbus Foundation, explained that «financing treatment for a rare disease of this kind costs between 10 and 15 million euros, a sum we do not have.» «We cannot accept leaving all those children who suffer from these diseases, whose treatment is technically possible, without a response due to lack of funding,» he added.
As highlighted, the RenHacer festival is «the excuse we have to bring the Basque society together and discuss rare diseases, through a high-value experience that helps us raise funds and carry out these clinical trials.»
Estíbaliz Martín, president of the CTNNB1 Association, noted that «thanks to the CTNNB1 foundation in Slovenia, we will start the first clinical trial at the end of this year.» «Now we can say that there is a treatment that gives us hope. But we need money and a lot of help from institutions, individuals, and altruistic entities like the Columbus Foundation, so that children like my daughter Paula can have a quality of life,» she affirmed.
Furthermore, Jose Ignacio Asensio, the Deputy of Sustainability, expressed the support of the Provincial Council of Gipuzkoa for this initiative, which, he said, «represents the best of our society: the ability to unite culture, science, and solidarity to transform realities.»
Projects like the Columbus Foundation inspire us because they demonstrate that when talent is put at the service of the common good, it is possible to offer real hope for girls and boys with ultra-rare diseases, whose lives can change thanks to research and collective commitment,» Asensio emphasized.
In line with this, Javier Cortajarena, territorial director of Laboral Kutxa, highlighted the entity’s commitment to society «reflected in supporting initiatives like the RenHacer Festival.» Additionally, through the LK Konpromiso fund, they donate a portion of the management fee to organizations selected by clients, through which 425,000 euros have already been channeled to collaborate on projects and actions with a positive impact on society.
In this edition, with the collaboration of Laboral Kutxa, a youth-oriented experience has been organized on September 13 in Arantzazu.
With the aim of raising awareness among young people about ultra-rare diseases and introducing them not only to top-notch music but also the latest advances in gene therapy, a session has been organized where they will have the opportunity to meet and share doubts and reflections with expert scientists in the field. It will be a full and free day, including transportation and meals, until full capacity is reached.
