Team Joe

Beauclair Family / Family-Led Giving Campaign

Thank you for your support in raising funds for the Skraban-Deardorff Syndrome (SKDEAS) Foundation. After Joe's diagnosis in 2021, we became heavily involved with the SKDEAS Foundation and developed friendships with many of the families impacted by this rare genetic mutation.  Joe is one of less than 200 identified cases globally and the Foundation is committed to ensuring that children like him can reach their full potential.

The foundation's mission is to advance research, increase public awareness, and unite various communities—scientists, patients, parents, government agencies, and more—in the fight for better treatments and care for those living with SKDEAS.

Your contribution, no matter how big or small, helps us move closer to a future where every individual with Skraban-Deardorff Syndrome receives the support and care they deserve. It means the world to us and to all the other families affected by this condition. Thank you for standing with us in this important cause.

  • $1,585

    Raised

  • $1,000

    Goal

  • 16

    Supporters

  • 0

    Days Remaining

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About Team Joe

Joe is a 6-year-old boy that loves hockey, his brother, giving hugs, laughing, playing with his friends and much more.  When you first meet him, he will make you smile immediately with his kind and funny personality.  He's also an extremely hard worker, having to work harder than his peers to do most everything.   

There are so many unknowns with Joe.  What will best help him thrive?  What will best prepare him for the future?  What does he want to be when he grows up?  Are kids always going to be nice to him at school? 

We are proud members of the Skraban-Deardorff Syndrome Foundation because it is has brought us a community that understands our family and the answers we so desperately seek.  The Foundation may be small, but it is mighty, and it depends entirely on donations to make advancements to help our kids reach their full potential.  

Previous funds raised have allowed Joe to participate in a research study that is aimed at understanding the unique features of children with SKDEAS to best assess future treatment approaches.  The neurodevelopmental assessments are specifically created for kids like Joe and tracks his eye gaze rather than the traditional testing that doesn't hold his attention.  The Foundation is also supporting a research study aimed to identify potential treatments, with one potential drug identified that is showing promise.  

The Foundation has also been integral at raising awareness for SKDEAS among the rare disease community and the world.  We are so proud of our Joe and all he has and will accomplish.   By supporting this campaign, you are supporting Joe and the other families touched by SKDEAS to pave the way for a better future.  Thank you!