Meet Luis. Luis is pictured here at the age of 16, living with Mucolipidosis III. There are times when the patient stories submitted to Global Genes Project are full of countless memories; depictions of struggles endured by rare disease; and hope for future research and awareness for cures and treatments of debilitating illnesses. Other times, we read about the loss of loved ones, those people that go undiagnosed, and much of the time the will to fight against the dreadful impact inflicted upon people’s lives.
In Luis’ case, we received a link of an organization (ISMRD.org) that was undoubtedly an important aspect of his life. And his touching picture.
We hope you will take a moment to read about Mucolipidosis III and the International Advocate for Glycoprotein Storage Diseases. ISMRD.org focus heavily on the ultra-orphans of the Lysosomal Storage Disease family, where there are few treatments and cures.
Luis has Hope in his Genes!