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 19, 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.
Thank you all so much for your continued support. We began this work nineteen years ago and are eternally grateful for everyone who has supported our mission to help children and families affected by Canavan disease. What began as one family's desire to save their child has grown into the single largest effort in the world focused solely on helping children born with Canavan disease.
Our financial support has enabled Dr. Paola Leone's team to continue their lifesaving work. Families of newly diagnosed children from all over the world contact Dr. Leone's team to find out what can be done to help their children. This is the only group to develop medical interventions that can help slow progression while treating the symptoms of Canavan disease. Between January 2015 and January 2017 Canavan Research Illinois has directed a quarter of a million dollars to Dr. Leone’s lab. CRI is contributing more funding towards medical research for Canavan disease than any other charitable organization in the world.
Each year we receive generous support grants from The Silver Foundation and Brent Bauer and Mary LaLoggia. These sponsorships allow us to direct virtually all private donations to research. This year our special funding has been increased by our benefactors enough to cover all of our overhead and operating costs for 2016 and 2017 allowing us to use 100% of every donation towards our mission. Additionally our new Family Networking Program has received a single sponsorship from Brent Bauer and Mary LaLoggia which is large enough for us to offer free tickets for all affected families to The 19th Annual Charity Ball on Oct. 21st, 2017 at the Marriott in Schaumburg, IL. There will also be a free breakfast for all affected families on the Sunday after the event. Dr. Leone and her colleagues will be available for questions during the event and will also be setting up free appointments for families the following day. We are currently seeking additional sponsorships to assist families with the cost of the hotel stay as well.
In October of 2016 Canavan Disease Research (the international division of CRI) initiated and launched the world's first international patient registry (the Canavan PIN). This is currently the largest database of Canavan patients available anywhere in the world. We now have an engaged clinic-ready community. An abstract detailing the success of the Canavan PIN was written by Vanessa Rangel Miller, the VP of Genetic Services at AltaVoice, and co-authored by Ilyce Randell. The abstract was accepted for a poster presentation at the 2017 ACMG Annual Clinical Genetics Meeting. The abstract and poster will be made available to the public in late March and we will be sharing the presentation at the time.
Funding from CRI has helped lead to scientific breakthroughs that will now enable doctors to insert the corrected copy of the ASPA gene directly into the cell where the disease is being expressed. Dr. Leone has already conducted several gene therapy trials and has learned through trial and error over the past 24 years that targeting neurons will not cure Canavan, we need to deliver the gene into oligodendrocytes instead; and now the technology is available to do so. This is the breakthrough we have all been waiting for and we have been able to help achieve this medical milestone with the generous support of our donors!
Thank you for your continued support!
Cofounder, President and Director of Patient Advocacy
Canavan Research Illinois
Canavan Disease Research