Share your 22q Story with Us

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We have met many wonderful children with 22q. We are grateful to the families who have come forward and shared their stories with us, to gain understanding and shed light on some of the milestones, setbacks, and steps of dealing with the disorder. We are learning that this is a young community-but greater in number than once thought, so we’d like to help encourage communication and learning through our website, to help families navigate through the disorder. Parents and Friends contact the Foundation all the time with questions about options for treatment, and milestones. Do you have information you'd like to share about a child or adult with a 22q deletion? We'd love to hear from you. Please feel free to fill out the information below and we will post to share online with our online community. Thank you in advance for sharing your story!

Please provide information about your child with a 22q11.2 deletion
Please provide necessary contact information
(This information is only for administrative purposes, and WILL NOT be posted on the site... only your STATE info will appear with the child's first name and photo, if desired.)
If you're not located in the United States please select other include your location inside of the "Your Story" field.
Please feel free to share information about your child with other parents
Include diagnosis information (when you found out), treatment and info about your child, hobbies, etc. Thank you!

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