Staff

Shannon Burkoth – Program Assistant

Shannon came into the rare disease space like many of you here. She was diagnosed with a rare disease in 2010. Her background is in healthcare and business management. In 2016, she began advocating for her rare disease group 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

Mapping the PIK3CA‑related overgrowth spectrum (PROS) patient and caregiver journey using a patient‑centered approach

Noreen Fairley – Collaborative Research Network Coordinator

Noreen has worked supporting rare disease nonprofits for the last 7 years. Coming to the field from a childhood love of volunteering that evolved into multiple degrees focused on Nonprofit Management and International Administration. Past positions at several small nonprofits have allowed her to wear many hats and learn about all aspects of administration, program management, advocacy, communications, and development.

Noreen has attended and presented at rare disease conferences across the country and abroad. She has experience planning and executing patient and scientific conferences as well as interfacing with the research and pharmaceutical communities.

Publications:

Contribution of patient organisations to the NCLs

Guidelines on the diagnosis, clinical assessments, treatment and management for CLN2 disease patients

Seth Haddix – Science Advisor

As a research scientist, Seth has been involved in the study and treatment of disease since 2010. While he initially studied cancer, he saw a massive need for research in rare diseases that do not receive the same attention as other “blockbuster” health areas. He completed his Ph.D. from Texas A&M University (2019), where he investigated possible therapeutic targets for Duchenne muscular dystrophy, a muscle wasting disease that affects 1 in 3500 boys. As a postdoctoral associate at Baylor College of Medicine in the lab of Matthew Rasband, he is developing animal and cellular models, viral strategies, and unbiased proteomics techniques to investigate the development and function of the neuromuscular junction, which is dysfunctional in a number of rare diseases. At various times throughout his research career, Seth has also been involved in science education. As a graduate student, Seth organized and taught at a yearly Brain Day event at local elementary schools to increase children’s interest in neuroscience. As a newly appointed Science Advisor for CSC, Seth is excited to help explain the current state of CLOVES research and to help identify new investigatory avenues to pursue.