ResearchTobin Grace


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This is my Maxie and me. He’s the inspiration behind my two decade journey on this path to discover the cure for Canavan disease.

He received gene therapy at the age of 11 months, and again when he was three and a half years old. He turned 21 on October 9th, 2018 and my mission is to continue to work towards the development of m pl re treatment options for children and young adults living with Canavan disease as well as work to advocate for and network affected families.


Ilyce Randell

Director of Patient Advocacy

Canavan Research Illinois


Tobin’s family originally reached out to Ilyce after getting Tobin’s diagnosis. Maxie and Tobin met at the 20th Annual Canavan Ball on October 13th, 2018.

Please take some time to discover more about Canavan Research Illinois and Maxie’s Story at


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