Changes in leadership at CLOVES Syndrome Community


KENNEBUNK, ME — (May 16, 2023) – The Board of Directors of CLOVES Syndrome Community today announced the planned transition of its longstanding Executive Director, Kristen Davis. Kristen informed the Board in January of her decision to step down as Executive Director, with her tenure to continue through early 2024. The Board will now proceed with a formal search for a successor and will consider both internal and external candidates.

Sara Robertson, Vice Chair of the Board, said “On behalf of the Board, the management team, the Scientific and Advisory Council, our Family Advisory Council and the entire CLOVES community, we are incredibly grateful to Kristen for all that she has done, for her leadership, and her unrelenting dedication to people with CLOVES and their families. Kristen and her beautiful family will always remain a cherished part of this community.” 

Since founding CLOVES Syndrome Community in 2011 after Kristen’s daughter Riley was diagnosed with CLOVES, Kristen worked tirelessly to raise funds and develop the organization into a respected, effective, patient-centered rare disease advocacy organization. She assembled high-performing internal and external teams to support a variety of community and scientific programs aimed at improving the lives of people with CLOVES.

Under her leadership, and with the support of caring and generous donors, CLOVES Syndrome Community made grants to international scientific research that directly contributed towards innovative discoveries and an improved quality of care, including the first FDA approved treatment for select patients with PIK3CA-Related Overgrowth Spectrum (PROS) in April 2022. In 2021, Kristen organized the first International Scientific Meeting for PIK3CA Related Conditions with over 300 attendees and launched the development of PIK3CA Related Conditions Research Network, a Collaborative Research Network (CRN) that aims to engage multidisciplinary, multi-institutional research teams from around the world to organize, prioritize and finance research across scientific fields related to CLOVES Syndrome.

CLOVES Syndrome Community was selected as an inaugural member of the Chan Zuckerberg Initiative’s Rare As One Network, a group of patient-led organizations driving progress in the fight against rare diseases. Recently, Kristen spearheaded the organization’s decision to grant $100,000 to develop the first zebrafish model for PIK3CA genetic mutations. This intrepid decision aims to provide researchers worldwide with an enduring animal model of CLOVES with key advantages over existing mouse models, including high-throughput drug screening. Discovering new uses for approved drugs provides the quickest route to pharmaceutical treatments for rare diseases like CLOVES.

Steve Handel, Secretary of the Board and member of the Executive Director transition subcommittee, noted that “the Board has been diligently planning to identify and engage a new Executive Director who will meet the needs of our community and its many stakeholders. Kristen has led the organization with the unique ability to see both the science of CLOVES and the individual humanity of the people living with CLOVES. We encourage all qualified candidates with a passion for CLOVES or the rare disease community at large to apply.” As of this announcement, the Board will begin accepting applications for the Executive Director position.

“I am eternally grateful for the trust that the CLOVES community has placed in me over the past 12 years, and I’m equally grateful to the Board, our donors, grant partners, researchers and friends. While I’m handing over the responsibility for the day-to-day operations for the organization, I will continue to be invested in CSC’s mission and long-term success,” said Kristen.

The Board of Directors is thankful to Kristen for her dedication, leadership and courage over these many years, a courage undeniably inspired by her daughter Riley and others who live with CLOVES every day with hope, determination and love.

About CLOVES Syndrome Community

CLOVES Syndrome Community is a patient-led advocacy organization where people with CLOVES Syndrome are at the center of our community. We believe all people with CLOVES Syndrome deserve access to expert medical care, safe and effective treatment options and an improved quality of life. We believe in bringing together our global community’s knowledge, creativity and optimism to advance innovative research for new treatments of CLOVES Syndrome. Our leadership includes our Executive Director, Board of Directors, Scientific Advisory Council and our Family Advisory Council. Informed by thought leaders within the scientific and medical community, our leadership engages a variety of experts and advisors from around the world. Our community naturally extends to family members, supporters within the rare disease community, clinicians, researchers, industry partners and more. We are continually growing our diverse group of engaged stakeholders who are dedicated to our vision and values.