At CNR in Rome, the association’s workshop “I”accompany you” on Stargardt syndrome
After three months of the “Ti Accompagno” Association’s work on “TACO,” a project aimed at bridging the information gap on Stargard’s disease and providing useful tools for those who, for various reasons, are affected by it to live with the condition, but also to offer a “bottom up” reference point for the collection of information that is fundamental for advancing research, and just over a month after the presentation of the project itself at the Sapienza University of Rome, the Castelnuovo Parano (Frosinone) association is back to making Stargardt talk. This time, the setting will be the most illustrious in the field of research: the CNR.
Stargardt is a disease that affects young people, a rare, orphaned, genetic disease that is only recently being researched and therefore beginning to be known about. There’s no cure, at least for today yet, and sufferers struggle daily to cope with the many difficulties that vision loss entails, waiting for a cure that will hopefully come from research. But there are not enough funds to continue those researches that have begun to take place.
The “Ti Accompagno” association, which precisely because of the recognized social importance of the work on Stargardt has received funding from BIC Lazio, has chosen to focus and have its attention focused on the world of Research; it has, therefore, asked and obtained that the CNR host the new workshop and that the meeting be organized at its headquarters in Rome, in piazzale Aldo Moro. The appointment is for Thursday, Oct. 22, at 3 p.m.00, Aula Bisogno (entrance via dei Ramni, 19). Bringing greetings from the influential National Research Council will be Dr. Riccardo Pozzo, director of the Department of Human and Social Sciences, Cultural Heritage.
Research so far with a growing group of people, doctors and researchers working on the Taco project shows that: it is true there is no blame, but neither are there answers and cures to propose. TACO, wanted to bring out the silence of those who live with the problem, the mute pain of those who as doctors treat and do research, the courage of those who live it on themselves: each of these aspects affects everyone. Now is the time to clear customs of the disease and make known what it consists of, but also to try to do more, that is, to make patients, protagonists of a communication that until yesterday was scattered in often isolated rivulets.
For the affected and their families, there is no form of information, only a few more attentive and loving doctors who help them individually.
Not institutional, widespread communication, in schools, within communities’s. Sufferers realize it late, struggle to find the right doctors, get an early diagnosis, look for the right glasses, talk about it with friends. They are alone. Now no more.
TACO is next to them and gives them a voice, extends a hand to help them communicate. Now the communication has started and will get stronger and stronger, will invoke research, and will begin at the CNR in Rome on Oct. 22.
