Charity cycling challenge raises funds for ultra-rare disease research

A local charity association focusing on giving visibility to an ultra-rare neurodegenerative disease has launched a 400-kilometre charity cycling challenge between Murcia and Granada. The aim of the challenge is to raise funds for the research into this disease, as well as inspire local cyclists to take to the road in a route that will take two days to complete.

IRF2BPL: A rare gene mutation affecting less than 15 people in Spain

The Por La Sonrisa de Elenita (For Elenita’s Smile) association aims to raise awareness and funds for the IRF2BPL gene mutation, an ultra-rare disease that often leads to severe developmental regression, epilepsy, and movement disorders. This condition affects just 14 patients in the whole of Spain.

Cyclists take on a 400-kilometre route in solidarity

The challenge will bring together a group of volunteer cyclists who will ride nearly 400 kilometres through Murcia, Almeria, and Granada. Organisers have also launched a campaign encouraging citizens to “sponsor a kilometre,” which allows people to contribute from €10 per kilometre. The funds raised from this effort will be funnelled into scientific research at institutions including the University of Murcia and the GENyO centre, as well as to family support programmes, special therapies, and outreach initiatives for patients.

Who is Elenita? The little girl from Murcia diagnosed with IRF2BPL

The “Elenita” in question is a young girl from Molina de Segura, born in 2017, who was diagnosed with this rare disease after having suffered a loss of motor skills since 2022. The official website for the association for which she is named states, “We work tirelessly to raise funds for three lines of research, raise awareness, and support those who suffer from this condition, offering hope and solidarity in the fight against this disease.” 

The cycling challenge has been supported by Murcia’s Director General of Sports, Fran Sánchez, stressing the importance of public officials getting involved in these types of solidarity sporting initiatives.

In a fusion of sporting and solidarity, the cyclists will embark on their adventure and raise funds for the smile of Elenita and the other children in Spain who live with this ultra-rare condition.