Rohan

Rohan
Dear friends and neighbors,

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.

Register for the Walk

2021 Walk for Strength Form for Rohan

  • NameT-Shirt Size 
    Adult 3XL, 2XL, XL, L, M, S. Youth XL, L, M, S. Click + to add additional participants.
  • Price: $25.00
  • Price: $20.00
  • If you are not walking at the listed location, but want to join the team, please select virtual and we will send your shirts to your home address.

Make a Donation

Rohan Donation Form

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