About Us
#CephalyConvention
The story behind Cephaly convention is a simple one, probably one that you’ve lived through yourself. Being a special needs parent to a disabled child is hard, but add in a rare genetic disorder and it becomes even more challenging. I was spending hours upon days researching information and looking for support groups in those first few months of diagnosis. Unfortunately when you’re dealing with a rare condition the information can be inaccurate or insignificant. So because of that; I started bringing families together in 2014. What started out as a small gathering with a few families, quickly turned into something much larger. We are now partnering with Lissencephaly Foundation Inc & Global Hydranencephaly Foundation to provide some amazing opportunities to our attending families. Make sure to follow our Instagram & Facebook pages ‘Cephaly Convention’ for updates on upcoming conventions and where we will go next.
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Great things are done by a series of small things brought together. -Vincent Van Gogh
Our Mission
Bringing families together, Spreading awareness, & educating all. Wether it be a personal meet up, a small gathering or a formal convention, our main goal is connecting families who need it the most.
Our Vision
We want to create a non profit organization to help continuously grow and fund upcoming events. Through our conventions we are able to continue spreading awareness in our communities and educating others about these rare conditions.