Frequently Asked Questions
We're a family, not doctors. These answers are what we've learned along the way, in plain words, with links to sources we trust. If you don't see your question here, reach out through our Connect page.
This page is not medical advice. Please talk with your child's doctor or care team about any medical questions.
About Canavan disease
What is Canavan disease?
Canavan disease is a rare inherited neurological disorder and a leukodystrophy. It affects myelin, the protective covering around nerve fibers, so messages in the brain do not travel as they should. Features and progression vary from child to child. You can read more on our page, What Is Canavan Disease?
How is Canavan disease inherited?
Canavan is caused by changes in the ASPA gene and is inherited in an autosomal recessive pattern. That means a child has the disease when they get a non-working copy of the gene from each parent. Parents who each carry one copy usually don't have any signs of it themselves. When both parents are carriers, each pregnancy has a 25% (1 in 4) chance of a child having Canavan. Canavan can happen in families of any background, but it is more common in people of Ashkenazi Jewish heritage.
Can I find out if I'm a carrier?
Yes. Genetic testing can show whether a person carries a change in the ASPA gene. Genetic counseling is recommended for people who have a family history of Canavan disease and are thinking about having children. A genetic counselor can explain the testing, what the results mean, and the options for your family. Ask your doctor for a referral, or search for one at the National Society of Genetic Counselors directory.
Is there a cure or treatment?
Not yet. There is no approved cure or treatment that stops Canavan disease. Care today focuses on comfort and support, such as nutrition, seizure care, and therapies like physical therapy. Researchers are testing gene therapy in small, early clinical trials, but none is approved yet. Our Treatments page shares where research stands, from a father's point of view.
Where can I find doctors and specialists?
Start with your child's pediatrician or neurologist, who can refer you to specialists such as a pediatric neurologist or a genetics team. These organizations support families and can be good places to ask for help finding care:
NTSAD (National Tay-Sachs & Allied Diseases Association)
To look for research studies, search "Canavan" on ClinicalTrials.gov, and talk with your child's care team before making any decisions.
About The Silas Project
Who are you?
We're Silas's family. Silas is 5 and has Canavan disease. He's on hospice, and right now he's doing pretty well. Mama (Hailey) writes Silas's Story, and Dad (Cliff) founded The Silas Project so Silas, and children like him, would be seen.
What do you do, and what don't you do?
We share Silas's story, help families find each other, and point people to trusted information and to organizations already doing important work, like NTSAD, the Canavan Foundation and the United Leukodystrophy Foundation.
We don't diagnose, give medical advice, recommend treatments or promise a cure. Medical decisions belong with your child's doctors and care team.
Are you a charity?
The Silas Project is an Oregon nonprofit public benefit corporation (EIN 42-4231135). We are not a 501(c)(3) organization yet, and we aren't accepting donations until that status is approved.
How is my information used when I fill out the Connect form?
Your submission comes privately to our family. Nothing is posted without your permission. If you ask to meet other families, we'll personally reach out, and we only introduce families when both say yes. There are no public message boards or family-to-family messaging on this site. If we've shared your child's story and you'd like it taken down, just reach out and we'll remove it within a week.
Getting involved
How can I share my child's story?
Go to our Connect page and choose "Share your child's smile." Send a photo and a few words about your child: what makes them laugh, what they love, what you want the world to know. Before anything is posted, we'll send you the exact words and photo to approve.
How can I volunteer?
Thank you! Visit our How to Help page and tap "Volunteer with us." Tell us a little about yourself and how you'd like to help. We're a small family team, so we may be slow to reply.
Can I donate?
Not yet. We'll open donations once our nonprofit status is approved. Want to know when? Get updates. For now, the best gift is sharing Silas's story.
Other questions
I'm with the media. How do I reach you?
Please reach out through our Connect page. Our family's time with Silas comes first, so we may take a little while to reply.
How can I get updates?
Check back on Silas's Story, where Mama shares news about Silas. To hear when donations open or when there's something new, Get updates.
The Silas Project shares information to help families learn and connect. It is not medical advice. Information about Canavan disease is summarized from MedlinePlus Genetics and the National Organization for Rare Disorders (NORD).