Canavan Research Illinois
URGENT MESSAGE FOR CANAVAN
Please help by
forwarding this to all the other families affected by Canavan
you want treatment for your child, or are unsure, or just want to
help another child with Canavan disease then please fill out this
survey and then forward it to other families or groups where they
might see it. This is the only International Patient Registry for
Canavan disease we need it circulated worldwide.
join the International Patient Registry for Canavan Disease
Please Click on this link to enter your
registry is maintained by 'PatientCrossroads' - they specialize in
helping small organizations advocate for patients with relatively
rare diseases. Their
platform utilizes the same level of security and privacy as the NIH
and adheres strictly to all HIPAA laws. Please go to this survey and
fill it out on behalf of your child. It takes approximately 20
To read more about the importance of this registry, from lyce
Randell, co-founder of CRI, mother of Max battling Canavan -
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
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, 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
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.
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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- we will receive a donation
Follow Us on and Facebook and Twitter
our Facebook Page for more announcements and events
In the News:
Max Randell at 2½
Now nineteen, Max has represented
our battle to save the children battling Canavan disease on:
FOX & ABC News
WGN & CBS News
Regis and Kelly
Join Us at the
The '18th Annual Canavan Charity Ball'
will be held on
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