Goshen family looks to spread awareness for CASK disorder

NOW: Goshen family looks to spread awareness for CASK disorder

GOSHEN, Ind. -- The Stiglitz family of Goshen is looking to raise awareness to CASK, an incredibly rare genetic disorder that affects three-year-old Sophie Stiglitz.

Only one in around 300 people are born with CASK, a disability that slows brain development. 

Sophie was diagnosed at just 10 months old, but her parents, Joe and Emily, have dived head-first into the world of therapy to ensure Sophie's best chance at enhanced motor skills.

The severity of CASK is a wide spectrum, with symptoms ranging from a lack of fine and gross motor skills to the inability to walk, seizures and more.

Sophie is on the higher-functioning end of the CASK spectrum but will likely have to live at home for the remainder of her life.

With such a low number of cases, CASK is not a disorder that receives constant attention from the medical research community, something the Stiglitz family is trying to change. 

Shortly after Sophie was diagnosed, her parents joined the Project CASK, which shares advice and promotes research for CASK treatments. 

The next step in order to raise funding is through an online auction, set to open on November 30th. 

That auction will feature more than 25 pieces of artwork that feature the "Liocorn", the Project CASK mascot, which represents their motto: rare as a unicorn, strong as lions.

More information about the auction and details about CASK can be found HERE.


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