Canavan Research Illinois
a voice for all
children battling Canavan disease, who have so few advocates,
and Max met with Hillary Rodham Clinton an advocate of curing
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 4½ 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, an all volunteer 501(c)(3) public charity
dedicated to raise
funds to support medical research, 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 have had dramatic improvements
in vision and their quality of lives. Because of our dedication -
children diagnosed today have therapies available to them that
previously did not exist.
Because Canavan 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 Research
Illinois and what we are doing to save the brave children battling
Canavan who have so few advocates. Alex is dedicated to becoming a
research scientist to conquer neuro-degenerative diseases.
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 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
BELOW TO DONATE NOW
is tax deductible to the full extent of the law
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In the News:
Max Randell at 2½
Now sixteen, Max has represented our battle to save
the children on:
•FOX & ABC News
•WGN & CBS News
•Regis and Kelly
Join Us at the Charity Ball!
The '16th Annual Canavan Charity Ball'
will be held on
*Invitation to be posted soon.
For our dedication to these brave children, we have received the following awards:
•Make A Difference
•Diet Rite Zero/Boundaries Award
proclaimed Canavan Disease Awareness Month
Click to view