Staff

Shannon Burkoth – Program Assistant

Shannon came into the rare disease space like many of you here. I was diagnosed with a rare disease in 2010. My background is in healthcare and business management. In 2016, I began advocating for my rare disease group and through Global Genes and grew a passion for advocating for all 7000+ rare diseases. While our disease groups vary, we are all striving for the same things; better quality of life, research, effective treatments and ultimately a cure for all. Shannon is proud to be part of the team here at CLOVES Syndrome Community.

Kristen Davis – Executive Director

Kristen founded CLOVES Syndrome Community in 2009, after her daughter Riley was diagnosed with CLOVES. At that time, no organization existed to support families and people living with this rare disease. CSC became a non-profit organization in July 2011. Kristen is a seasoned Executive Director of a global, patient-led advocacy organization with over twenty years of experience in social services and non-profit leadership.

Kristen represents CLOVES Syndrome Community as a National Organization of Rare Disorders (NORD) Member Organization, as a member of the Global Genes Foundation Alliance and as a participating member of The American Society of Pediatric Hematology/Oncology Vascular Anomalies Special Interest Group (ASPHO-VAC SIG). In addition, she is engaged with multiple biopharmaceutical companies to advocate for the needs of our complex patient population.

Publications:

Expert Consensus on the Testing and Medical Management of PIK3CA-Related Overgrowth Spectrum

Meet the PROS

Laura Gabriele – Fundraising Manager

Laura began her journey in healthcare related fundraising after a close friend’s mom was diagnosed with a rare cancer. As she became more involved in the community, she was shocked to see the disparity in awareness and funds, between rare cancers and rare diseases, and other well known health issues. It became her mission to work with organizations that focus on awareness, education, funding research, and support for rare diseases and it is that personal mission which brought her to CLOVES Syndrome Community.

Her goal as Fundraising Manager for CLOVES Syndrome Community, is to help guide our community and our families to achieve fundraising success on a grassroots level and to build our fundraising portfolio through corporate sponsorships, foundation and government grants, and major gifts. She is excited to be a part of the CLOVES Syndrome Community and looks forward to working with our team to bring support, research and education to our community.