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apertOWL will be creating “Be Wise” kits that we hope will be given to families upon diagnosis of Apert syndrome or at some point during treatment. This packet of information will include an introductory letter from an experienced Apert family, a detailed, yet easy to understand description of Apert syndrome, a checklist of “next steps” and a brochure that details helpful links and resources.


Another goal we have is to share information with educators. Speaking from experience, we want to share our stories, discuss ways to promote an environment of acceptance at schools and how to discuss differences with children.


If you are a healthcare professional or educator interested in either receiving “Be Wise” kits when they become available, or in being connected with a Mac’s Pack speaker/volunteer, please complete the email form on our CONTACT US page.

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