Contact Us

Questions about the foundation? Need to find a doctor for a second opinion? Curious to connect to other families? We are here to help you.


For patients, families, and others.  Send us an email.
For legal and financial matters.


Send us a letter:
20 Park Road, Suite E
Burlingame, CA 94010
To speak with us. 888-314-8853
For doctors and researchers. Send us an email.