Parent Connection is meant to offer you valuable links to information that you might find helpful in advocating for your child’s health. Some of these web sites provide just one example of those that have been recommended by parents, so search for other sites specific to your geographical area for additional information.

This page will continue to evolve over time, so make sure to check back. If you have any questions or suggestions about what should be included on this page, please feel free to contact us.

Learn more about these disorders individually here.


The first and foremost concern for parents is just how much their child is suffering. It can always help for a child to have visuals in order to properly verbalize their pain. Please reference the Wong-Baker FACES(R) scale to help you make important decisions about your child’s treatment. And remember to always consult with your child’s physician before going through with any treatment plan.

For clarification of the pain scale, please visit The Wong-Baker FACES website.


Financial and Social Services. Sometimes you need more than information. If you are in need of specific resources that BJCSF cannot provide, we can try and connect you to local social services and organizations nearby who may be able to help… Fill out a request form for additional assistance here. (Please note: BJCSF does not offer financial or social services assistance directly to individuals, per our IRS designation. But we are happy to direct you to other resources who may be able to help!)

Links Disclaimer: Links of interest to other websites from this location are provided as an added value by the Bobby Jones Chiari & Syringomyelia Foundation, Inc. By accessing the links from this site, you will be leaving Bobby Jones CFS’s web site.  Although we have reviewed the information on these sites prior to creating the links, we are not responsible for the content of the sites. Information on these website pages may become dated or change without notice, and we do not represent or warrant the information contained on these linked pages as complete or accurate.  Please be advised that you will no longer be subject to, or under the protection of, the privacy and security policies of Bobby Jones CSF’s website.  We encourage you to read and evaluate the privacy and security policies on the site you are entering which may be different from those of Bobby Jones CSF.

Parent Support



Reviewed on 06/2022