"Nothing can prepare you for the loss of your child" I'm positive that this is true. I've heard these words from so many parents who have lost their children. Even though I haven't experienced this loss personally I know with everything that it is true. There is...
Ilyce Randell
lyce Randell is the mother of two children, one typically developing 14-year-old boy named Alex and one 19-year-old boy named Max who was born with Canavan disease. She has been working to help families affected by Canavan disease for over 19 years by advocating for patient rights, raising money for medical research and increasing awareness about Canavan disease. Ilyce has recently launched the world’s first international Patient Insight Network (PIN) for Canavan disease through a partnership between AltaVoice, (formerly PatientCrossroads) and Canavan Research Illinois. This tool is critical for advancing research and networking patients worldwide. Ilyce is also the President, Director of Patient Advocacy and Cofounder of Canavan Research Illinois.