“Mom, don’t worry, I have come with a syndrome and the cure. It is on this path that I want you to be at my side.” Casilda Cebrián awoke in the middle of the night realizing it had been a dream. She was at the NICU next to her eight month old son, Anton, whom she had just seen as a teenager in her dream. Anton had been admitted to the hospital when he began seizing. The medical staff administered drug after drug until Anton’s little body was in a state of shock. “It was a terrible and profound experience,” says Casilda. A month after leaving the hospital Anton was diagnosed with Angelman syndrome (AS). “It was crushing, but after being between life and death, we took it differently.”
The dream Casilda had in the hospital filled her with hope and strength as she dedicated herself to finding out all she could about AS. Through her research she found FAST. As Casilda explained, “It filled me with a breath of fresh air, because FAST was providing solutions and hope in the form of solid evidence based research programs.” When Pedro López, a fellow AS parent, recruited Casilda to help form FAST Spain, she knew this was her mission.
Pedro López’s son, Manuel, was diagnosed with Angelman syndrome two years ago. As Pedro read up on the neurological disorder he couldn’t understand why the word “cure” was taboo in the Spanish speaking community. He decided to start a WhatsApp group to share AS research from FAST and educate the community. Through that group Pedro identified the “Dream Team,” as he affectionately calls FAST Spain’s board: Domingo Delgado, Casilda Cebrián, David Fernández, Dayvis Bacallao, Óscar San Nicolás, Maite Sanz, María Galán, Juan José Palomares and, of course, Pedro.
FAST Spain’s board is a powerhouse of skills and experience. Every member is contributing with great value added to help FAST Spain accomplish its mission to: 1) raise awareness of AS in the Spanish speaking community by identifying and translating important research into Spanish; 2) bring clinical trials and treatments to Spain; and 3) mobilize funds and human resources to help in the process of finding a cure for AS.
Domingo Delgado, FAST Spain’s chairperson admits, “I have reached a lot of goals and challenges in my life, personal as well as business. I am well known in my sector because I always accomplish the different goals my company needs. The same happens on a personal level. Now I am faced with the most important challenge and goal in my entire life: help to find the cure that my daughter, Carla, and the rest of the Spanish Angelman community need.”
An incredible resource of knowledge and experience that FAST Spain draws upon is María Galán and Juan José Palmores. Their adult daughter Elena was diagnosed with Angelman syndrome 28 years ago. María recalls what it was like, “Our daughter Elena, who was eight at the time, was the first AS case diagnosed in Spain. We were alone without any information for another four years. Finally, we managed to get in touch with other Angelman families. At that time, there were less than 100 families connected around the world. It was from those families that we learned the most about AS. Sharing information was a lifeline for us. We understood that together, and with a lot of work, you can achieve things that at the beginning our doctors say were impossible.” During this time María and Juan José organized events to raise money to send to FAST US because they believed a cure was possible.
María continues, “I think that the rest of the families see in us the collaboration of everything that is possible for the AS community: the dreams, the hopes and above all, continuing to fight to win this battle. This is a long-distance race and communicating to the rest of the families the knowledge that maintaining our children in the best condition, always working with them, never abandoning the fight, will lead us to finally achieve, through research, our goal of a cure.
The Spanish community has rallied around FAST Spain. Many families and professionals are joining the organization with the desire to contribute professionally and raise money and awareness. With more than 90 registrants at the FAST Virtually Unstoppable Global Summit & mini-Gala last December, Spain had the third largest representation, following the United States and Canada. Professional translation of the FAST Science Summit presentations was key in carrying out FAST Spain’s mission of providing AS research knowledge in Spanish. In addition, having an ASO clinical trial to treat Angelman syndrome underway in Spain has helped FAST Spain gain momentum.
FAST Spain has several projects in the pipeline this year. They will host their first CAN (Cure Angelman Now) community fundraiser and are committed to using all of the money raised to fund research. Since the majority of AS research is currently being done in the United States, FAST Spain plans to co-fund US based AS research grants with FAST US as well as pursue local research opportunities in Spain. FAST Spain is selling wristbands to promote awareness and raise funds. They also plan to organize a “Run FAST” road race to help boost CAN donations. In addition, Domingo and Casilda are rallying their network of connections in order to create FAST Spain Ambassadors, a group of well-known actors, musicians, and even a top 10 footballer, who will serve as FAST Spain spokespeople. It is a pleasure to have FAST Spain on our Global FAST team! In the words of Domingo, “We are not weak if we join forces for the common good; alone we can do little, together we can do everything.”
Contacta con FAST España: firstname.lastname@example.org
FAST Spain in the news: https://huelvaya.es/2021/01/14/carla-sindrome-de-angelman-huelva/