News

News

Canavan Disease In The News!

Ilyce and Max Randell have represented our battle to save the children battling Canavan disease on national shows including: Dateline NBC, Leeza, Montel, NBC, FOX, ABC, WGN CBS News and Live with Regis and Kelly. We have won the 'Make A Difference Day' Award as well as the National Diet Rite Cola Zero Boundaries Award for our dedication to the children battling Canavan disease.

Our mission to cure Canavan disease has also been featured in the Philadelphia Inquirer, Washington Post, the Chicago Tribune, Pioneer Press, CJN, Daily Herald, JUF, as well as newspapers worldwide.

Now 20, Max continues to make appearances helping to raise awareness of Canavan disease and the desperate need for funding to support life saving medical research.

October is 'Canavan Disease Awareness Month'


Ilyce Randell also writes and contributes stories for publication to The Mighty.
As the parent of an affected child she uses her experience to help other families affected by Canavan disease.

Canavan Research Illinois Logo

Save the Date

The 20th Annual Canavan Charity Ball will
be held on Saturday, October 13th, 2018 at the
Chicago Marriot in Schaumburg, Illinois.
Click here for more information.

 

 


With 2017 drawing to a close we'd like to thank everyone who has been a part of our mission to help children and families affected by Canavan disease. There have been over a million people who have joined our fight already! Between our fundraising and lobbying efforts we've directed over ten million dollars towards lifesaving research since our inception. This money has come from private donations, benefactors, corporate sponsorships, pharmaceutical companies and Federal funding that was only made possible through our rigorous lobbying efforts. When I received my son Max's diagnosis almost twenty years ago I chose to fight for him and all the children born with Canavan disease. Maxie has received gene therapy twice as well as many other experimental medical interventions to keep him alive, happy and healthy. We wait in hopeful anticipation for a third gene therapy with the newer and much improved technology! His love of life gives me the motivation and inspiration to keep pushing forward....please help me give this gift to other families.

Thank you and have a wonderful New Year!
Ilyce Randell