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Charity in Jerez

Valentina, un grito a la esperanza

Valentina is a 5-year-old girl from Jerez. At 4 months she was diagnosed with fibrodysplasia ossificans progressiva (FOP), an ultra-rare disease that affects 1 in 2 million people. In Spain there are about 40 cases, and 2 of them are in Jerez. In 2022 her parents, Tamara and David, founded the association Valentina, un grito a la esperanza FOP, to push for research.

What is FOP?

They call it stone man disease. Muscles, tendons and ligaments turn into bone and form a second skeleton that gradually locks movement, while the mind stays free. The first sign is usually in the big toes. A knock, a fall, an intramuscular vaccine or a virus can set it off, and it also advances on its own. FOP has already taken away 90% of the movement in Valentina's neck. Today there is no treatment or cure.

Everything goes to research

In three years they raised more than €200,000. In 2024 they donated €80,000 to the University of Oxford for the STOPFOP trial. Another €100,000 went to the laboratory of Dr. Gonzalo Sánchez Duffhues, in Oviedo, where they financed, with the association Por dos pulgares de nada, from León, a four-year thesis that studies whether an already known medication works against FOP.

II Trail Guerrera Valentina

Saturday, February 13, 2027, from the Vega Veguita Municipal Sports Center, around the San Cristóbal mountain range. 15 km trail at 10:30, 10 km hike and Mini Trail for children from 5 to 14 years old. With the Dorsal 0 you help even if you don't run. The first edition was run in 2026.

Registrations

How to help

Become a member for €5 a month, as more than 100 people already do. You can also donate by Bizum to 07098 or to the BBVA account ES13 0182 3243 4602 0162 8234. And share their story: the more people know about FOP, the less rare it becomes.

Contact

Tamara and David, at 635 086 637 or at [email protected]. The social media accounts are @valentinaungritoalaesperanza on Instagram and Facebook.

"If you're reading this, you're already helping us. Raising awareness matters so much, because that's how this ultra-rare disease becomes less rare."

Tamara, Valentina's mother

The association thanks Ezequiel and Adrián de Jesús Flores, the Brotherhood of the Sagrada Lanzada and Esaú Venegas. "We are all Valentina!"

Upcoming charity events

Look for them in the events calendar under the label Charity in Jerez.

Rare diseases

A disease is rare when fewer than 1 in 2,000 people have it. Individually they are uncommon, but there are thousands of them, and in Jerez there are families looking for research, a diagnosis and support.

More associations and causes

Activities, courses and training for young people and adults with physical disabilities

Adapted sports, group outings, courses and support for work. They are places to do something you like and, at the same time, make friends in Jerez.

Leisure, sport, training and jobs for children, young people and adults with an intellectual disability, autism or deafness

Weekend clubs, swimming, courses and help finding work, at associations in Jerez.

Follow the Qué hacer en Jerez channelPlans in Jerez, shop offers and what's happening in the city, every day on your WhatsApp. It's free.Join the channel

Data from the associations themselves, the Jerez City Council and the University of Cádiz, checked on October 30, 2026. Before going, it is a good idea to call or write to confirm times and ages.

Data from the Jerez City Council, Viva Jerez, El Mira, the European Commission, the association Valentina, un grito a la esperanza FOP and Sportmaniacs, checked on October 23, 2026.