Mission/Vision/Values

The Smith-Kingsmore Syndrome Foundation is a registered 501(c)(3) non-profit organization, created by parents of children diagnosed with Smith-Kingsmore Syndrome. It is the only global organization funding SKS research and providing education and support to the Smith-Kingsmore syndrome community.

Our vision Our vision is a world cured of Smith-Kingsmore syndrome.

Our mission is to improve the lives of all people impacted by Smith-Kingsmore syndrome by accelerating research and connecting our global community.

Accelerating Smith-Kingsmore Syndrome Research

We won’t stop until we have treatments and a cure for Smith-Kingsmore syndrome. We fund research, coordinate patient data, and mobilize researchers and clinicians across the globe to work towards a better life for everyone impacted by Smith-Kingsmore syndrome.

Supporting and connecting our global community

The Smith-Kingsmore Syndrome Foundation is here so no one has to face Smith-Kingsmore syndrome alone. While our community may be small, we are mighty! We are here to provide you with information, resources and community connections with others who know what you are going through.

Our values

Courage: We do not give up in the face of obstacles. We know this journey will involve calculated risks, hard choices and setbacks. But we do hard things every day when we deal with Smith-Kingsmore syndrome! Our ambition is large and we are determined – we won’t stop until we have treatments and a cure for Smith-Kingsmore syndrome.

Collaboration: Together, we go further. We collaborate with research and medical professionals, and our community across the globe, towards the common goal of treatments and cures for Smith-Kingsmore syndrome.

Curiosity: The path to treatments and cures is complex, and a curious mindset is required to ensure we power through challenges. We actively learn from others in the rare disease world, look for opportunities where others have not, and keep digging until we find answers.

Inclusion: We are a global, diverse community. Smith-Kingsmore syndrome impacts us in many different ways. We include and serve all parts of our community.

Integrity: This Foundation was created for the SKS community, by the SKS community. We serve our community with transparency and integrity, always.