Gene Therapy to Save Younatan& Revital- A Global Effort!

Our worst nightmare became reality when both our precious children, Younatan 21 years old and Revital 18 years old, were diagnosed with Lafora disease, a rare and relentlessly progressive neurodegenerative disorder. Lafora disease is the most severe form of genetic epilepsy, characterized by the accumulation of abnormal glycogen deposits called Lafora bodies in the brain, muscles, and other tissues. This leads to a devastating array of symptoms, typically beginning in adolescence with seizures, progressing to myoclonus (sudden muscle jerks), difficulty walking, problems with coordination, cognitive decline, and ultimately, the loss of all motor and intellectual function. 

This cruel illness is stealing our vibrant, talented kids from us, robbing them of their ability to walk, talk, use their hands, and even recognize us. They are now both bedridden, their bodies ravaged by constant seizures.

Time is not on our side. Lafora disease is advancing rapidly, and we are watching helplessly as our children decline with each passing day. But there is a powerful beacon of hope: gene therapy.

We are urgently raising $3 million to fund our portion of the development of a potentially life-saving gene therapy for Lafora disease. In an extraordinary act of solidarity and compassion, another family in Italy, who also has a child bravely battling Lafora, has pledged to cover the other half of the estimated $6 million needed! This incredible partnership gives us an even greater chance to make this life-saving treatment a reality.

This groundbreaking research will be conducted under the esteemed Professor Minisian at the University of Texas. Of the funds we aim to raise, $500,000 will directly support the crucial research at the university, laying the groundwork for a cure. The remaining $2.5 million is our share of the estimated cost to develop and bring this vital gene therapy to clinical trials – the critical step that could offer Trulio's daughter the child in Italy, and other children battling this devastating illness a chance at life.

Gene therapy offers the only realistic possibility of a treatment or even a cure for Lafora disease. It targets the root cause of this devastating condition, offering a chance to halt its progression and potentially reverse some of its cruel effects. 

We have already witnessed the rapid decline of our once healthy and active children. Every moment is precious. This gene therapy, now within closer reach thanks to the incredible generosity of another Lafora family, represents their best, and perhaps only, chance to survive and have a future.

Our Goal: $3,000,000 to fund our half of the Lafora gene therapy development under Professor Minisian at the University of Texas, in partnership with a courageous family in Italy.

How Your Donation Will Help:

$500,000: Directly supports critical research into Lafora disease at the University of Texas.

$2.5 Million: Will fund our share of the complex and costly process of developing the gene therapy, including preclinical studies, manufacturing, and ultimately, clinical trials.

We are deeply moved and inspired by the selfless support of the family in Italy. Their partnership fuels our determination even further. Now, more than ever, we believe that a cure is within reach.

Please donate whatever you can. Every dollar brings us closer to the $3 million needed to unlock this life-saving gene therapy for our children and the child in Italy. Please also share this campaign widely with your network. This is a global fight, and every share amplifies our hope.

We are desperate, but we are also filled with immense gratitude and renewed hope. Together, with the incredible support from Italy and your generosity, we can make this life-saving gene therapy a reality. Thank you from the bottom of our hearts for standing with us and our new allies in this critical fight for our children's lives.