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 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.

Canavan Research Illinois Logo

Save the Date

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:

2018 has been a milestone year for Canavan disease, and Canavan Research Illinois. CRI is the world's largest organization devoted to Canavan disease and we continue to grow and lead the effort to cure Canavan. We have the largest community of Canavan patients anywhere in the world connected through our registry, annual event and social media services. Our fundraising efforts enable us to move medicine forward while helping more families through our networking and patient advocacy services.

Canavan Research Illinois works with all stakeholders in the Canavan space, including biotech and pharmaceutical companies, affected families, and by forming collaborative efforts with other advocacy organizations and research teams.

There are currently two separate gene therapies with teams hoping to bring their technology to patients. We are working closely with both teams to ensure that our patient community is kept up to date as information becomes available One trial will be funded entirely by a pharmaceutical company. That technology has already been tried in one child. It's too soon to predict a start date, but things are progressing and moving forward. The other trial is being funded by a handful of families and will treat only their own children. The original date given for surgeries was spring of 2018 with a budget of 1.2 million dollars. But many problems have arisen along the way, and now the soonest possible start date is summer of 2019. They also need an additional and two million dollars to make this trial happen. At this point it's impossible to know which trial will reach the clinic first, but it's amazing that we have two separate teams working on treating such a rare disease.

The 21st Annual Canavan Ball and Family Networking Event will be held at the Marriott in Schaumburg Illinois on October 19th, 2019. We will continue to keep our community updated about all relevant news.

Ilyce Randell
Director of Patient Advocacy
Canavan Research Illinois
www.canavanresearch.org
Cell 847.309.1992