Board of Directors

Joe Barclay
Board Member, CLOVES Syndrome Community

Joe joined CLOVES Syndrome Community in October 2019. With 16 years of business management experience, Joe has helped build industry leading renewable energy firms. Joe is currently Chief Operating Officer at Greenlight Energy Group, LLC, the first WBE-certified renewable energy provider in the U.S., and founder and CEO of Orion Renewable Energy Trading Group LLC, the largest provider of renewable energy certificates to the Federal government. Joe has also held senior management positions with leading global renewable energy and carbon market firms. Joe brings his dedication and passion for growing businesses to CLOVES Syndrome Community and lives in Brooklyn with his partner Kelly and her daughter Grace.

Emily Burgess
Secretary of the Board, CLOVES Syndrome Community

Emily’s daughter Anna Grace (10) was diagnosed with CLOVES at the HVMC at Cincinatti Children’s Hospital.  During this time, Emily and her husband Adam, found CLOVES Syndrome Community, and became interested in advocating for their daughter. Emily is a graduate of Limestone College with a degree in Psychology.  Emily served on the CLOVES Syndrome Community Family Advisory Council before becoming a Board Member.  Anna Grace and her younger sister, Emma enjoy dancing and keeping their parents busy! A stay at home mom, Emily enjoys being home while her kids are small and she teaches dance classes a few days a week.

Kyle Capossela
Board Member, CLOVES Syndrome Community

Kyle first learned of CLOVES after his nephew was diagnosed with it in 2019. The CLOVES Syndrome Community has helped educate his family about the disease and informed them of ways to help. He became associated with the CSC by becoming a volunteer in 2020. Kyle joined the Board of CSC in March 2022. He hopes CLOVES Syndrome Community can contribute to finding a cure for CLOVES and other rare diseases. Kyle is a Commercial Banker and resides in Charlotte, North Carolina.

Kristen Davis
Executive Director of CLOVES Syndrome Community

Kristen founded the CLOVES Syndrome Community website 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 an advocate for people living with rare diseases and chronic illnesses and enjoys collaborating with other organizations, researchers, clinicians and providers.   Her educational background is in Social work, Social justice and English. Recent past volunteer roles include Advisory Committee submissions reviewer for the Rare Children’s Storybook Project and Member of the Children’s Hospital Boston Family Advisory Council (FAC).  

She 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.

Kristen lives in Maine, with her husband Marc Cerabona.  She has two college aged children, Cole and Riley. 

Lindsey Godar
Chair of the Board of Directors, CLOVES Syndrome Community

Lindsey is from St. Louis Missouri and has two sons Austin and Zack .  She connected with the CLOVES Community in 2013 when doctors suggested that Austin (originally diagnosed at birth with KTS) may in fact have CLOVES Syndrome.  After biopsies and reviewing all of Austin’s records, doctors at Boston Childrens Hospital confirmed his new diagnosis of CLOVES.

Lindsey is a senior sales representative for a distributor of packaging and shipping supplies called Tripack.  She’s worked at Tripack for the last 17 years and also assists in the purchasing for the company.  When she isn’t selling boxes she enjoys spending time with her boys.  Zack plays select baseball and their summers are mostly spent at the ball fields.  She has been advocating on behalf of her rare gem for many years now and is excited for the opportunity to do even more with CLOVES Syndrome Community.  

Steve Handel
Board Member, CLOVES Syndrome Community

Steve joined CLOVES Syndrome Community in February of 2022. He is currently the Chief Operating Officer at Caring.com, a mission-driven company helping Seniors and their caregivers find long-term care. Steve has extensive leadership and management experience leading operations, strategy, sales, and marketing teams across a wide range of industries. He is passionate about helping the CLOVES Syndrome Community find ways to magnify their critical impact on our community.

Steve holds a Bachelor’s degree in finance and entrepreneurship from the University of Dayton and a Master’s in Business Administration with a focus on corporate strategy from The Ohio State University. He lives in Fort Mill, SC with his wife, April, and two boys, Noah (6) and Finn (4).

Ashley McNamara
Treasurer of the Board, CLOVES Syndrome Community

Ashley joined CLOVES Syndrome Community during the process of becoming a formal organization in the summer of 2011.   Ashley is a Certified Public Accountant.  She has held various accounting positions and currently works full time as a Financial Reporting Manager for an oil and gas company.  Ashley lives in Tulsa, Oklahoma with her husband Steve and children, Loretta and Van.

Irina Pivneva
Board Member, CLOVES Syndrome Community

Irina joined the CLOVES Syndrome Community (CSC) board in February 2022. She holds a degree in Psychology and Neuroscience and hopes that her experience in healthcare research would be helpful to the CSC. Although originally from Turkmenistan, Irina currently lives in Montreal, Quebec, Canada with her partner and two daughters, one of whom has CLOVES. CSC has provided the much needed access to information and support for Irina and her family.

Sara Robertson
Vice Chair of the Board of Directors, CLOVES Syndrome Community

Sara is from Austin, TX and joined the CSC board in October 2019. The CLOVES community has played a crucial role in her family’s lives ever since they were told “I think your son has CLOVES, the good news is there’s a very strong community.” Sara’s hope is that everyone with a rare disease can find strength and support in a community for them.  Sara is Senior Vice President, production at Austin PBS and an active member of her community. Her most cherished role is as partner to husband Jeremy and mom to their children Sebastian and Ryder.