Our Story
Cure ADSSL1 is a patient-led non-profit organization founded by parents Priyanka and Naveen, whose children were diagnosed with the rare neuromuscular disease ADSS(L)1 Myopathy. This organization emerged from their personal journey of navigating the challenges of this ultra-rare condition, caused by a mutation in the ADSS(L)1 gene. By partnering with researchers and organizations, they are committed to driving efforts towards developing a treatment.