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.
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.
Board Member, CLOVES Syndrome Community
Alice Fuisz joined the CLOVES Syndrome Community Board in December 2019. Alice’s son was treated for a lymphatic malformation at Boston Children’s Hospital when he was an infant, but the term CLOVES did not exist until he was a teenager. Alice, her husband Tony, and son have been attending the CLOVES Syndrome Family Conference since 2012. Alice recalls how important it felt for her son to be able to meet other teenagers with CLOVES and for she and her husband to talk with other parents. They all find the community to be a vital link to others dealing with CLOVES and a great way to keep up to date on scientific developments. Alice is a practicing general internist and a managing partner of Washington Internists Group, a small private internal medicine group in Washington D.C.
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.
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.
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.
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.