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 21, 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.
The 21st Annual Canavan Charity Ball will
be held on Saturday, October 19th, 2019 at the
Chicago Marriot in Schaumburg, Illinois.
Click here for more information.
Year End Update:
In 2019 and beyond Canavan Research Illinois will bring hope to more families. Over the past several years CRI has been able to reserve significant funding in order to advance research initiatives aimed at helping older patients; "older" refers to children past two years of age.
With good care (and even without treatment) most kids affected by Canavan disease are living into adolescence, and many well into their teens and young adulthood. There is virtually nothing available beyond symptom management to help "older" patients.
We have always known that we needed treatment options for older kids, but most funds we raised were used to advance gene therapy research. Now funding for gene therapy research is being taken care of by pharmaceutical companies, freeing up more funding for other projects.
The current potential gene therapy trial is only for 4 to 6 kids, and it's being funded by the parents of those children hoping to receive treatment before (and if) the product ever becomes available commercially. That technology, if approved, will be more geared towards babies, so unfortunately the older children won't benefit.
Our goal has always been to look at ways to help the older patients who are largely being cast aside. Even if they are too old to be cured, it is still necessary to try and reverse some damage, halt additional disease progression and improve their quality of life. The brain's ability to heal itself is amazing and not fully understood. We need to focus more on helping the older kids who have no treatment options. Significant funding is already set aside, but it is not enough. We still need additional funds to move forward and help the older patients.
Out of approximately 600 patients living with Canavan disease throughout the world only 4-6 children have any hope for treatment within the next year, and they are paying for it privately...let that sink in! Canavan Research Illinois is a beacon of hope for the other 99.17% of the children who have largely been abandoned and dismissed. As a patient's advocate, and mother of a 21 year old son who has Canavan disease I will not forget about the older kids, and I will make sure no one else does either!
Please help support CRI and our mission to help ALL children living with Canvan disease. It's absolutely critical to target this disease early, but in reality by the time a gene therapy clinical trial is funded and approved there are only a handful of kids under two available to participate. These kids are growing up and getting older and they make up a vast majority of patients. With so many patients living into their teens we absolutely need to help kids over the age of two!
Your financial support can help millions of people affected by related diseases As a single gene disorder Canavan serves as a great model for teams studying many more common brain diseases such as Alzheimer's, ALS, and Parkinson's. There is always hope, and we need to gain a better understanding of the brain's potential to heal itself. My own son is 21 years old and living with a degenerative brain disease, but I still have hope that he can be helped. My goal is to improve his quality of life and anyone else in a similar situation. It's never too late, and I will never stop fighting for Maxie and all these kids!
Director of Patient Advocacy at Canavan Research Illinois