FAQs

Please 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 mission "Spring 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  progressive leukodystrophy.  

What are the children with Canavan disease like?

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 Canavan disease.

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 Disease?

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 affected.

Is screening available? 

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 Illinois?

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.