Gonzalo Pérez Zunzunegui: 270 km along the Basque Coast to change lives - A solidarity trail for ataxia telangiectasia
Gonzalo Pérez Zunzunegui, the solidarity trail runner who has raised more than 5,000 euros for his fourth challenge in support of Aefat: the "Ruta de los Faros".
With the aim of raising 8,000 euros, Gonzalo hopes to purchase two special chairs that will allow young people with this rare disease, which causes physical disability, to enjoy mountain routes.
Ataxia telangiectasia, a disease with no cure or treatment, affects three young people in the Basque Country and more than 40 children and adolescents throughout Spain.
Next Monday 2 September, Gonzalo Pérez will embark on a new superhuman challenge to support children and young people with ataxia telangiectasia, who together with their families are part of the Aefat association. For a week, he will run 40 kilometres a day along the Basque coast, with the aim of raising funds for the purchase of two special chairs that will allow these young people with physical disabilities to experience mountain routes.
Gonzalo has already raised more than 5,000 euros thanks to the support of sponsors and crowdfunding. "I am deeply grateful to all the people and companies that support me. This is the first time I run this emblematic Lighthouse Route along the Basque coast, and I am thrilled to be able to contribute to helping the young people of Aefat enjoy nature with the Joëlette chairs. I have seen their happiness in the marathons, and I know that being able to explore the mountains will provide them with motivation and positive experiences to face their illness.
For seven consecutive days, Gonzalo will run 40 km a day along the Basque coast. This trail runner from Bilbao, currently living in Álava, began his career as a solidarity runner pushing pushchairs of children with ataxia telangiectasia in various marathons, without having a previous connection with the families, simply because a friend invited him to participate.
However, as he got to know these young people and their families closely, and understood the serious physical complications caused by this devastating disease, he decided to get even more involved. Since then, he has devised and completed "titanic" sporting challenges every year, always in "self-sufficient" mode, to raise funds for research into this rare, genetic, neurodegenerative disease, which still has no cure or treatment and forces children to use wheelchairs from around the age of nine.
In 2021, Gonzalo ran 211 km in three days on the "llanada alavesa" and raised more than 2,000 euros for Aefat. In 2022, he completed the Camino de Santiago running 800 km in 16 days, losing 16 kilos in the process and raising more than 8,000 euros. In 2023, he tackled the round trip around the Basque Country and Navarre in the mountains: 500 km in 10 days, with more than 10,000 metres of positive altitude gain and summiting a peak every day, raising more than 6,600 euros.
Gonzalo also runs regularly with Team Zurich Aefat, pushing the chairs of children and young people with ataxia telangiectasia during the 42 km of each marathon. To date, he has completed eight marathons, most recently the Madrid Marathon in April, and his next goal is the San Sebastian Marathon. He even has the Aefat logo tattooed on his arm.
Patxi Villén, president of Aefat, expressed his gratitude for Gonzalo's new endeavour. "He's a real exceptional person. He trains, organises the whole challenge, publishes his chronicles to spread the word and is in charge of finding sponsors, whom we also thank for their support. Gonzalo has shown us time and time again that there are still amazing people out there willing to give their all to help others".
ROUTE OF THE LIGHTHOUSES
Gonzalo is all set to take on his fourth challenge for Aefat from 2 to 8 September: the "Route of the Lighthouses" along the Basque coast, from Biarritz to Getxo, passing through iconic places such as Hondarribia, Donostia, Zumaia, Plentzia and San Juan de Gaztelugatxe, among others. In total, he will cover 270 km through the mountains in seven days, with a cumulative difference in altitude of 10,000 m, all in "self-sufficient" mode, carrying everything he needs in his backpack to complete this epic route.
It expects to reach 8,000 euros you need to purchase the two special chairs. Donations of private individuals through the challenge posted on a fundraising platform https://www.migranodearena.org/reto/luz-de-esperanza-corriendo-la-ruta-de-los-faros-por-aefat.
ON ATAXIA TELANGIECTASIA AND AEFAT
The ataxia telangiectasia (AT or A-T) is one of the 300 types of ataxias that exist and causes severe progressive physical disability. It is a multisystemic disease that usually manifests itself before the age of two years, although some sufferers have waited up to 10 years for diagnosis because it is confused with other pathologies. It affects the functions of different organs and causes inability to coordinate movements, progressive loss of mobility (by the age of 9, a wheelchair is needed), speech difficulties, stunted growth, immunodeficiency, eating difficulties, skin and vision problems, pneumonia and other complications. Because of the same mutation, patients are more prone to malignant tumours (such as sarcomas, lymphomas, leukaemias...).
Aefat is a non-profit association created in 2009 and declared of public utility since 2014. The association belongs to FEDER (Spanish Federation of Rare Diseases) and is a founder member of the international A-T Global Alliance (www.cureat.org).
