Dear Friends,

It is with a heavy heart that I am writing to let you know that my adored grandson Max Randell passed away on April 18th at 3:02 a.m. We welcome you to offer a prayer for our Maxie in your faith.

Canavan Research Illinois will continue to fight for the children as a tribute to Max’s life. We have establlished "The Max Randell Memorial Fund for the Cure" to fund pioneering research in Max's name.

Maxie was a medical pioneer when he became the youngest person in the world at 11 months of age to have gene therapy for a neurodegenerative disease.  He was warrior in the battle against Canavan disease and he became the face of the disease. Max represented all the children battling Canavan and the need to support medical research in the media worldwide. He became an inspiration to many with his winning smile and love of life.

Our October benefit has been cancelled by the hotel due to the Covid situation thus we will not be hosting our annual Canavan Charity Ball this year. If you would like to make a donation to honor the memory of our beloved Maxie a secure online donation may be made below. Checks may be mailed to the charity address. Please make a note that your donation is in honor of Max’s Miracle. 


Peggy Shapiro-Nyeholt 

Vice President


The 21st Annual Canavan Charity Ball


Pictured above: Canavan families at the  21st Annual Canavan Charity Ball which was held on Saturday October 19, 2019 at the Marriott Schaumburg Hotel. Ten Canavan families (pictured above) traveled to attend this amazing event and all were able to meet with representatives from ASPA who shared that they are on schedule for a treatment trial in 2020 and that families will not be asked to pay for this gene therapy! So much amazing news for our community. Also joining us for a wonderful evening were representatives from National Tay Sachs and the Canavan Foundation.

 For photo's and details of this wonderful evening please visit our Facebook page.