Rohan loves music and for the past few years the sound track to our lives is Mr. Rogers. Hit play here and read along:
Amar and Laura are on a journey to find a treatment for Rohan's rare genetic condition because we've got to do it. We can’t simply sit and ask for the treatment and research to happen. We've got to make it happen. And with you, we can do it.
Join us to raise awareness about the three rare genetic conditions that lead to Cerebral Creatine Deficiency Syndromes. Two of the conditions, AGAT and GAMT deficiency are treated with supplements and lead to good outcomes if caught early on. Rohan has the third condition, Creatine Transporter Deficiency (CTD), which does not have a treatment and leads to global developmental disabilities, serious cognitive and speech impairments, and sometimes seizures. But Rohan is a sweet happy kid and he works hard every day to learn new things because he's got to do it. And so do we!
We have embarked on this journey to push the research into creatine deficiencies forward because we've got to do it. Walk with us from wherever you are, wear your t-shirts, and tell people about creatine deficiencies. Every little bit helps and together we're going to do it.