About Us

Who We Are?

Scleroderma Kids Alliance (SKA), a 501(c)(3) nonprofit, was created with one powerful belief:
Every child living with scleroderma deserves hope, connection, and a community that understands.

Founded by Karen Ceresnak, a Pediatric ICU nurse and parent of a child diagnosed with scleroderma, SKA was born from firsthand experience with the isolation, uncertainty, and emotional strain families often face. What began as a dream to create a supportive space for kids quickly grew into a national effort to bring families together, build community, and ensure that no child navigates scleroderma alone.

Why We Exist

Scleroderma in children is rare—and because of that, families often feel isolated, overwhelmed, and unsure where to turn.

We’re here to change that.

SKA provides connection where there was once distance, community where there was once confusion, and hope where there might have been fear.

Together, We Are Stronger

Scleroderma Kids Alliance is more than an organization—it’s a growing family. We invite you to join us in building a brighter, more connected future for every child living with scleroderma.

Legal & Nonprofit Details

Scleroderma Kids Alliance (SKA) is a tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code.
EIN: 39-4910742
All donations are tax-deductible to the fullest extent of the law.

Meet Our Team

Core Values

Compassion: We lead with empathy and understanding.
Connection: We bring families together to share, support, and heal.
Empowerment: We help children and families build confidence and resilience.
Integrity: We act transparently and responsibly in all we do.
Collaboration: We partner with families, clinicians, and the community to achieve impact.

Strategic Plan

Scleroderma Kids Alliance (SKA) is a nonprofit organization. SKA aims to fill the critical gap in pediatric scleroderma resources by offering connection, and support through programs, family events, a family camp, and partnerships with medical and community organizations.