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.
Last year, our parent group raised $94k for Gene Therapy research and drug development. While this may seem like a lot, much more is needed to fund these expensive projects. This year, we are aiming to raise $250,000 to drive research for Cerebral Creatine Deficiency Syndromes in 2022. We know this is ambitious, but we are confident that we can achieve this goal with your help!
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. Every little bit helps and together we're going to do it.
This holiday season, we invite you to give alongside us. Rohan needs heroes! Every little bit counts and makes a difference.