FAST Global Highlight - Spain

In 2020, several Angelman syndrome mothers and fathers met with the firm intention of proposing a change in the Spanish Angelman community. We met with a group of families with identical diagnoses to offer a path of hope for something that is closer every day: a cure for Angelman syndrome. We wanted to forge a path in Spain that had never been done before, which is to disclose and invest funds within the lanes of research that FAST USA was carrying out. We began to do so with the firm belief that it was the right action for our loved ones.

In September 2020, we started what is now FAST Spain and we were legalized in January 2021. Today we have raised more than €200,000 that will be wisely invested, following the advice of our Scientific Committee, in the Natural History Study.

One of the achievements that FAST Spain is most proud of is welcoming the Angelman syndrome clinics of two Spanish hospitals on our Scientific Committee.

In addition, we have three main projects:

• First, the biggest and most challenging project was bringing together the Spanish community and inviting them to be part of our foundation. Now, the biggest source of income of funds are the Angelman families.
• Secondly, convincing the two main hospitals with medical specialists in Angelman syndrome to join our foundation and be our spine.
• And last but not least, launching the Natural History Study, following recommendations from Professor Laurent Servais, Dr. Allyson Berent, several labs, and our Scientific Committee. Both hospitals have signed it and it will be a reality in a few months!

There is a popular saying in Spanish that translates to: It is better to be the tail of a lion than the head of a mouse (in English it is something like "being a big fish in a small pond”), so we believe in the roadmap created by FAST USA and our Spanish community is much more aware of the progress of the different lines of research. Our Natural History Study and our Angelman clinics will be key for our only goal: to cure Angelman syndrome. As we say in Spain: #tuereslacura (you are the cure). We have tattooed this sentence in our hearts.

-FAST SPAIN

Domingo Delgado (Chairperson) | Maria Galan (Science Director) | Pedro Lopez (Secretary) | Dayvis Bacallao (Treasurer) | Juan Jose Palomares (Science Director) | David Fernandez (Executive Director) I Maite Sanz (Science Director)