Our mission is simple. Help the family in front of us, and change how the next one is treated.

Three commitments

Financial assistance

Parents of children with craniofacial conditions face financial pressure most families never see. Insurance decisions can limit the options for a child’s care, forcing parents to choose between what is covered and what is best. Those choices can devastate a family’s finances, which in turn makes it harder to get quality care. It is a vicious cycle.

That is why the foundation’s first goal is to help parents and caregivers of children with Cloverleaf Syndrome and other types of craniosynostosis with financial assistance, paid through 501(c)(3) partners such as hospitals, schools and therapy programs. {#financial-assistance}

Public education

The foundation wants to educate the public about the mistreatment of people with disabilities, and to publicize positive interactions and events involving people with disabilities. We believe most people want to be fair. Most discrimination comes from a lack of understanding, not malice. So we treat communication and education as the keys to changing how people act, starting with children, through our book Hugs, Handshakes & High Fives .

Honest information

The foundation gathers and publishes news about treatment options for parents and caregivers of children with craniofacial conditions, with a specific focus on Cloverleaf Syndrome. We intend to publish all appropriate information without bias, noting both positive and negative reports on treatments. Start with the research hub .

What is Cloverleaf Syndrome?

Cloverleaf Syndrome, also called Kleeblattschädel deformity, is a rare form of craniosynostosis in which several or all of the skull’s sutures fuse before birth. Because the skull cannot grow normally, it takes on a three-lobed, cloverleaf shape.

The condition often comes with hydrocephalus, a build-up of fluid inside the skull that raises pressure on the brain. Children may have a high forehead, eyes that protrude (proptosis), a beaked nose and low-set ears, and many have trouble breathing and feeding. Without timely treatment the neurological and cosmetic challenges are serious. With it, as Alex’s story shows, children grow up.