Kristen Davis - a 6 Who Care 2012 Award Winner

1:55 PM, May 24, 2013   |    comments
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Kristen Davis' (Kennebunk) daughter Riley was born with CLOVES Syndrome. Resources, support, and information about this illness were scarce, so Kristen has made it her mission to change this.

CLOVES is an acronym for an extremely rare congenital disorder affecting fatty tissue, blood vessels, skin, skeletal development, and internal organs. It took a full five years to successfully diagnose Riley. Kristen created resources, especially online, whereby other CLOVES patients, their families, and the medical community can connect for information and support. She meets regularly with doctors and patient case managers at Children's Hospital Boston, not just in relation to her daughter's care but to share medical information nation- and worldwide. In 2011 she organized a CLOVES family conference and launched the non-profit CLOVES Syndrome Community, a hub for medical and family-support communication for CLOVES patients, leading to improved patient education and even a research milestone in June when the gene mutation for CLOVES was identified.

Kristen has transformed the experience of her daughter's serious illness into an opportunity to help other families. Before Kristen's work, there was nothing binding these families and patients together - a very lonely prospect in the face of a challenging, chronic medical condition. Now, they are able to lean on one another for support, information, and hope for better treatment.

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