help us in our efforts to increase public awareness about Canavan
disease. Forward this link to as many people as possible,
http://www.youtube.com/watch?v=6YEBwzUUIMQ and help us with our
to Action 2008- Education and Awareness". We would like
to ensure that members of the at-risk community (Ashkenazi Jews) are
aware that there is a panel of 9 genetic tests, including Canavan,
that is available to them. And it is essential to let members
outside that small population know that this disease is not bound by
ethnic background-it has occurred in virtually every population...
so in addition to testing and prevention we must increase our
efforts to discover new ways to treat, and one day cure Canavan
disease. Testing is only half the battle!
What is Canavan disease?
Canavan disease is a rare and devastating
fatal childhood neurodegenerative disorder affecting the formation
of myelin, the white matter of the brain. Canavan disease is a
What are the children with Canavan disease
All children with Canavan disease are severely disabled... they are
unable to hold up their heads, sit, walk, or talk. Even with profound
physical challenges these children are like any other children in many
ways. They are happy, smart, and love their friends and families.
What Is Canavan Research Illinois?
A 501(c)(3) public charity based in Illinois dedicated to curing
Why should people care about a rare
disease like Canavan?
Developing a cure and treatment for Canavan
disease has the potential to help millions of people young and old.
Although rare, Canavan disease is considered by many leading
researchers to be the ‘perfect model’ for approaching therapeutic
methods to truly aid in the treatment and cure of many of the
neurodegenerative diseases such as Multiple Sclerosis, Parkinson’s,
ALS, Alzheimer’s, and stroke as well as other childhood genetic
illnesses. Recently an experimental vector, developed for delivery of
corrected genes to the Canavan children, was used in a clinical trial
for Parkinson's disease.
How does a child get
Canavan is an autosomal recessive genetic
disease. There may be no known family history to
warn parents that they might be carriers of Canavan disease. Both parents must be carriers for them to pass
it on to their children. If both parents are carriers, with each
pregnancy there is there is a 25% chance that the child will be
Yes, Canavan is a genetic disease that can occur in any ethnic
group, however is most prevalent in people of Eastern-European and
Ashkenazi descent. Genetic testing is now available (please consult
your physician or health care provider).
Screening is most effective if both parents are of Ashkenazi
decent. It is not as effective in couples of mixed ethnicity.
Testing alone will not totally prevent this cruel disease. We
need treatments and a cure for the children battling Canavan
disease today as well for it's future victims.
Can I really make a difference?
Finding a cure for Canavan disease was once
thought to be impossible. Now, because of your help, these precious children finally have a chance for a
future. Private donations range from $10 to $30,000 and each one is
deeply appreciated. Every dollar counts; we have already raised and
directed close to a million dollars into lifesaving research.
Are donations tax deductible?
Yes, to the full extent of the law.
Can my donation be made in honor,
celebration, or in memory?
Yes, and the intended party will receive a
special acknowledgement card from the charity.
Do you qualify for company matched
donations and corporate grants?
Yes, as a 501(c)(3) public charity we qualify for both. Please let
us know if there is a grant opportunity that you are aware of.
Why is private funding necessary?
Because Canavan is a rare disease, government funding for research
is scarce. Canavan Research Illinois is dedicated to finding a cure
for Canavan disease.
Who was the youngest child treated with
Gene Therapy for Canavan disease?
Max Randell made medical history in September 1998 when he became
the youngest person in the world to receive experimental gene
therapy for a neurodegenerative disease. Max was one of four
children (of 15 treated) to generate new myelin as a result of this
trial. All the participants showed quality of life improvements.
Who are the founders of Canavan Research
Ilyce & Michael Randell and Peggy Shapiro-Nyeholt & Jim
Nyeholt - Parents and grandparents of Max Randell, a victim of
Canavan disease are the co-founders of Canavan Research Illinois.
Can I help by becoming a volunteer in the
battle against Canavan disease?
Absolutely, we welcome your help! Please contact Ilyce Randell or Peggy Shapiro-Nyeholt
at 1-800-833-2194 or 847-222-0736 for more information.