Devastated, shocked, isolated, panic, deeply saddened, traumatized. Those are just some of the emotions commonly described by parents whose children have been diagnosed with Canavan disease. What do I do? How will I care for my child? The most important first steps are to educate yourself on the services available for your child. This information can easily be found by contacting your county and state Department of Health offices. For example, in New York State children under the age of 3 who have special needs are entitled to early intervention services including physical therapy, speech therapy, occupational therapy and educational services. Organizations such as Parent to Parent USA and Family Voices can also help you learn what is available for your child.

Reaching out to other Canavan parents is comforting and reassuring. Please visit Canavan Research Foundation and join the parent web board. It is a site where parents converge and answer each others’ questions. National Tay-Sachs and Allied Diseases (NTSAD) also provides support for Canavan families.

If you are interested in pursuing treatments and becoming acquainted with the Canavan research efforts please contact Jacob's Cure or contact Dr. Paola Leone.