About us

UNITED AGAINST LAFORA

TEMPO ZERO is a non-profit organization established to support research on Lafora Disease and to help families affected by this disease who have no more time.

WHAT IS LAFORA DISEASE

Lafora disease is a terrible genetic disorder that falls under the group of progressive myoclonic epilepsies. It is a neurodegenerative disease that usually begins between the ages of 12 and 15.

Specifically, the disease is caused by mutations in one of the two genes EPM2A and EPM2B, which encode the proteins laforin and malin, respectively.

Their deficiency negatively impacts glycogen metabolism, leading to what are known as glycogen storage diseases: the malfunctioning of these genes causes a progressive accumulation of this substance in the brain in the form of Lafora bodies, with highly toxic effects on nerve cells.

WHEN I GROW UP I WILL BE…

29 April 2024

My name is Romina, and I am Giorgio’s mother. Giorgio is a 15-and-a-half-year-old boy. At the age of 11 and a half, he had his first tonic-clonic seizure, something he had never experienced before. We later discovered from the neurologist that Giorgio had been making a slight eye movement since he was a child, rolling […]

THE STRENGTH OF MOM PAOLA

5 April 2022

We are learning about Lafora Disease through the stories of girls like Martina and Carola who live with it every day. Unfortunately, there are also girls who have faced this disease, fought against it, and were only freed when their bodies (which were no longer truly theirs) decided to give up. Daniela‘s story began in […]

The Story of Carola

4 October 2019

There are only 200 people in the world like Carola, 16, from Fiumicino, and 30 in Italy. Two hundred children and adolescents are condemned because there is still no cure for Lafora disease, a genetic alteration that causes sugars to accumulate, especially in the brain, due to the absence of proteins involved in glycogen metabolism […]

THERAPIES

Currently, there is no cure, only pharmacological therapies useful for containing epileptic seizures and myoclonus. Unfortunately, the progression leads to the shutdown of motor and cognitive abilities, resulting in a state of dementia and then a semi-vegetative state, with a fatal outcome between the ages of 22 and 25.

It is a disease that has been studied for over 20 years, resulting in a vast bibliography. More importantly, research has made significant progress, and in recent years new projects have started, including two gene therapies and an enzyme therapy that we managed to bring to Italy and are currently undergoing clinical trials.

For young people with Lafora, there is no more time!

SCIENTIFIC COMMITTEE

Dr. Roberto Michelucci
Director of the Complex Operational Unit of Neurology at Bellaria Hospital in Bologna.

Prof. Gabriele Costantino
Director of the Department of Food and Drug Sciences at the University of Parma.

Dr. Paolo Prontera
Medical Geneticist at the Umbrian Regional Reference Center for Medical Genetics.

Dr. Mara Gerloni
PhD, Chief Scientific Officer at Cosmobiolabs
San Diego (USA)

Thinking that we always have time is an innate tendency of human beings. We can reflect on whether we have spent our past time well, we can pause to consider the immediacy of the time we are living, and we can glimpse the uncertainty of the time to come.

In all of this, we always think we have time.

Now, imagine that one day, life decides to give our time an unexpected, decidedly bitter flavor. And imagine that the time we have to rid ourselves of this condition before it is too late is short, very short.

THERE IS NO MORE TIME.
ALL WE HAVE LEFT IS
ZERO TIME.

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