Canavan Research Illinois, Dedicated to curing Canavan disease
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Canavan Research Illinois - Cure Canavan disease


Canavan Research Illinois
Dedicated To Curing 
Canavan Disease

www.canavanresearch.org




October Is Canavan Disease Awareness Month


'Make A Difference Day' Award
 2004 Recipient


 

Canavan Research Illinois
 

To join the International Patient Registry for Canavan Disease:
Click on the link below to enter your confidential data:  
https://connect.patientcrossroads.org/?org=Canavan 

This registry is maintained by 'PatientCrossroads'. Their platform utilizes the same level of security and privacy as the NIH and adheres strictly to all HIPAA laws.

To read more about the importance of this registry, from llyce Randell, co-founder of CRI, mother of Max battling Canavan -  Click here

Organizations are invited to join the Canavan Disease Patient Insights Network (PIN)
Click here


 Click on photo to view video - Daily Herald News - 10/31/16


The 18th Annual Canavan Charity Ball

Pictured above: Canavan families at the 18th Annual Canavan Charity Ball  held on Saturday October 8, 2016 at the Marriott Schaumburg Hotel. We rolled out the red carpet in celebration of Max Randell's 19th Birthday! Seven Canavan families (pictured above) traveled to attend this amazing event and all were able to meet the leading researcher in Canavan disease, Paola Leone, Ph.D., and her associate Dr. Chris Janson, at the event as well as have an individual consultation with the Dr's the following morning.

We look forward to more children and families attending the 19th Annual Canavan Charity Ball next year on Oct. 21st. Please see Event/Benefits page for more details.
For photo's and details of this wonderful evening please visit our Facebook page.


On March 6th 1998, we were given the news that no parent ever wants to hear... our son, Max Randell, was diagnosed with Canavan disease.

Our beautiful 4 month old baby boy was dying of Canavan disease, a degenerative brain disease for which there was no cure or treatment. At that point we decided to fight for our dear little Max and all the other children with Canavan disease.

We soon learned that there was one chance in the world for our son... experimental research pioneered by parents determined to keep their children and  hope alive. In the hopes that no parent would ever have to hear those words again, our family founded Canavan Research Illinois, a volunteer-based 501(c)(3) public charity dedicated to raise
funds to support medical research for Canavan disease, increase public awareness, and network Canavan families.

As a direct result of the cutting edge medical research we support, many of the children battling Canavan disease have had dramatic improvements in vision and their quality of lives. Because of our dedication - children diagnosed with Canavan disease today have therapies available to them that previously did not exist.

Because Canavan disease serves as a model for other neurological diseases, our advancements can also benefit millions suffering from debilitating neurological diseases such as ALS, Parkinson's, Alzheimer's, Multiple Sclerosis, and stroke.

Max's 11 year old brother Alex (pictured below with Max and Ilyce) is our youngest volunteer. Alex stuffs and stamps envelopes and educates everyone he meets about Canavan disease and Canavan Research Illinois and what we are doing to save the brave children battling Canavan disease who have so few advocates. Alex is dedicated to becoming a research scientist to conquer neuro-degenerative diseases.His disability prevents him from talking, but Max Randell, center, smiles broadly whenever he cuddles with his mom, Ilyce, and younger brother, Alex.

Alex recently was invited to present to the NIH the critical  need for funding for a potential new trial that promises to  make a difference for children like Max, battling Canavan disease, who have so few advocates. His moving presentation  was very well received by Dr. Story Landis, Director of National Institute for Neurological Disorders and Stroke (NINDS), and scientists from NINDS and NIH.  Click here for the Daily Herald article article

Ilyce & Michael Randell, co-founders
Canavan Research Illinois

Secure credit card donations may be made in via PayPal or Network For Good or mail to Canavan Research Illinois, PO Box 5823, Buffalo Grove, IL 60089.
Your donation is tax deductible to the full extent of the law.

 
 

 
 


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Please visit our Facebook Page for more announcements and events

 

 

 

In the News: 

Canavan Research Illinois - Max Randell, battling Canavan disease
Max Randell at 2

Now nineteen, Max has represented our battle to save the children battling Canavan disease on:
................................
Dateline NBC
FOX & ABC News
WGN & CBS News
Regis and Kelly
Leeza/Montel
Washington Post
Daily Herald
Pioneer Press
Chicago Tribune
Philadelphia Inquirer


Join Us at the Charity Ball!

The '18th Annual Canavan Charity Ball' will be held on

Sat. 10/8/16

*Click for Invitation...


Awards

For our dedication to these brave children,  we have received the following awards:

Make A Difference
 Day Award

Diet Rite Zero/Boundaries Award


Awareness

October proclaimed Canavan Disease Awareness Month
Click to view