Josslyn

Jen Marrion / Family-Led Giving Campaign 2025

Through the Family-Led Giving Campaign, we’re helping more families find the same strength and support we’ve found in the SKDEAS community.

  • $433

    Raised

  • $500

    Goal

  • 6

    Supporters

  • 26

    Days Remaining

Recent Transactions

About Josslyn

Every day, Josslyn brings joy into our lives with her silliness, infectious laugh, and love of musicals, game shows, and the Macy’s Thanksgiving Day Parade. Diagnosed with Skraban-Deardorff Syndrome (SKDEAS) at age six, she’s worked incredibly hard to do things many take for granted - learning to walk, talk, and express her big personality. She’s funny, sweet, and determined, and she reminds us daily what it means to show up with heart. 

At home, we celebrate the little things that make Josslyn who she is: her love of singing and dancing, her hilarious jokes, and her ability to quote favorite songs and shows with perfect timing. These everyday moments mean everything to us. They’re reminders of how far she’s come and how deeply joy can shape a family’s journey. 

Our family is proud to join the SKDEAS Family-Led Giving Campaign, a community-driven effort supporting the SKDEAS Foundation. Funds raised through this campaign help advance understanding of Skraban-Deardorff Syndrome, create helpful resources for families, and build a stronger, more connected global community. 

 By contributing, you’re not just supporting research or programs. You’re standing alongside Josslyn and families like ours who face each new day with hope. Together, we can help ensure that every family affected by Skraban-Deardorff Syndrome finds the support, information, and encouragement they deserve. 

Next July, we’ll head to Philadelphia for the SKDEAS Family Meeting. It will be a special opportunity to reconnect with friends, share experiences, and celebrate how far this community has come together. There’s something truly meaningful about being surrounded by families who understand this journey. It’s a reminder of why this campaign matters so much and how powerful connection can be. 

Your kindness and support help keep that spirit alive. Whether you choose to donate, share our page, or simply take a moment to learn about SKDEAS, you’re helping families like ours feel seen, supported, and never alone.