ALLIANCE MLC FOUNDATION

Our story begins like so many others—two young boys, a happy home in New York, and the everyday joys of watching your children grow. But when our younger son, Marios, started missing developmental milestones, our world started to shift. At just over a year old, we got the heartbreaking diagnosis: MLC, a rare, progressive disease affecting the nervous system, that progressively results in debilitating loss of motor function. MLC currently has no cure. There are fewer than 1,000 cases in the world and our son's case is the only one in Greece where we come from. We were told all we can do is try to offer Marios a normal life, but how do you do that when your child’s future is so uncertain? Instead, we chose to act. We founded Alliance MLC, a foundation with a mission to bring families and scientists together—and to fight for a cure. Marios is now 7 years old and, despite the best efforts of a multi-disciplinary support system we have put in place, MLC is steadily further compromising the quality of his life. In fact, just as this page was getting ready Marios suffered a severe head trauma that has drastically worsened his condition. We are racing against time to support MLC research that could offer him some quality of life, before it's too late.

For the first time, there’s real scientific progress and hope in gene therapy studies for MLC—but we urgently need your help to fund the next steps so medical research can advance rapidly and give kids like Marios the future they deserve. With your support, we can better understand this rare condition, expedite the development of therapies that can delay or stop disease progression, and turn fear into hope for all children and families impacted by this severe disease.

Please donate today. Stand with Marios and all kids with MLC. Together we can change lives.

Special thanks to Daphne Lambrinou, Giacomo Presti, Katrina Parks, Simon Campos, Thouly Dosios and Michalis Alexakis for their help on creating this video.