Canavan Family Networking Program

Seeking additional sponsors for our new 2017 Canavan Family Networking Program

A generous donation from Brent Bauer and Mary LaLoggia will enable up to 20 affected families and their children to attend The 19th Annual Canavan Charity Ball at no cost, as well as receive a free Sunday breakfast buffet at the Chicago Marriott in Schaumburg, Illinois.

As the mother of a 19 year old son who is living with Canavan disease it has been my life's mission to aggressively fund research towards discovering the cure. But it is also extremely important to help families affected by this disease be able to meet each other without asking them to spend an astronomical amount of money, or making it necessary for them to do their own fundraising just to attend.

CRI was founded by the parent of a child living with Canavan disease so we understand firsthand the financial burden and other challenges faced by families every day. We also understand the desire to meet other families going through the same daily struggles. Canavan is not exactly like any other disease, our children are unique and so are some of the issues we deal with. Our goal is to expand our yearly fundraising event without creating any additional cost, work or pressure for Canavan families wishing to attend. Because our lives are challenging enough there will be no application process, just RSVP and let us know that you’re an affected family. No Canavan family is required or expected to do any fundraising in order to attend this event. We want to give everyone another opportunity to meet in person, enjoy a relaxing weekend in a comfortable non-structured setting, and learn more about all the latest medical advancements.

Families will have the opportunity to meet one another for the first time, or reconnect with old friends, learn about the most current research and schedule private appointments with a team of doctors who specialize in Canavan disease.

This is a unique opportunity for everyone. There is no other program like this available for Canavan families anywhere. This is a chance to unite families with each other, the doctors who are working on Canavan disease and also introduce families to some of the benefactors who have been supporting CRI for almost twenty years. Canavan disease is rare and unlike any other disease. I want to give more families an opportunity to meet each other during a relaxing weekend where the entire focus is on Canavan disease and helping our children!

If you are interested in becoming a sponsor or hosting a fundraiser to help families please contact me. Even if you are unable to help please SHARE this post! I have several months to raise the funds but I can't do it alone!

Canavan Research Illinois is a tax exempt charitable organization, all donations are tax deductible to the full extent of the law.

For patient advocacy consulting services please contact Ilyce Randell at