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 purchase tickets to this fabulous event - featuring dinner, dancing, and our amazing silent auction tables - click here

The 18th Annual Canavan Charity Ball will be held on Saturday October 8, 2016 at the Marriott Schaumburg Hotel. We will be rolling out the red carpet in celebration of Max Randell's 19th Birthday! Funds raised will advance medicine aimed at helping all children and families affected by Canavan disease.


WE NEED YOUR HELP!

We need everyone's help ASAP!  Please read and sign this petition. Pfizer needs to  know that there is worldwide support and the possibility of profit by using newly acquired technology for Canavan disease. They are going to move forward with this technology using smaller diseases first, so of course we want Canavan to be one of the first clinical trials because it's progressive and the children battling Canavan don't have the luxury of time to wait.

Please read and sign the petition, make a comment, and then share the post and encourage others to do the same. It doesn't cost ANYTHING and we need to keep Canavan disease on the radar at Pfizer. They own the latest technology to develop a cure but are not obligated to move forward quickly, or to move forward at all. This is the first step and the easiest part of patient advocacy so please lend a helping hand. Let Pfizer hear your voice. Please speak for the children who cannot speak for themselves by signing and sharing this petition. This could open up millions of dollars in research to treat and cure Canavan disease.

Click on the DNA below to read and sign the petition Click to Sign petition
Let Pfizer know that you want a cure for Canavan!

This is going to help kids like Max and then hopefully millions of other people with related diseases. Please help us keep Canavan disease on Pfizer's radar because one day this same technology might be something you need to save a loved one or even your own child.


Our Story

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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In the News: 

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

Now eighteen, 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
in Illinois

Click to view