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Board of Directors

Brenda J. Alexander
Secretary, CLOVES Syndrome Community

Brenda joined CLOVES Syndrome Community online before it became a formal organization in the summer of 2011.  In March 2011, Brenda became more actively involved in the CLOVES community through the first CLOVES family conference held at Children’s Hospital Boston. Brenda is a certified Elementary and Special Needs Teacher. She previously worked in public elementary schools in Massachusetts as a Special Education Teacher with young students identified with learning disabilities. Currently, Brenda sits on her local school committee as its vice-chairperson. Brenda has lived in Massachusetts and Maine with her husband John, daughter Callie, and son Ben.

 

Emily Burgess
Vice Chair 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.

 

Adrienne Davis Guier
Board Member, CLOVES Syndrome Community

Adrienne joined the CLOVES Syndrome Community in October of 2013.  Adrienne is a Personal Assistant and Nanny for a family in Tulsa, Oklahoma. She volunteers regularly at her daughter's elementary school and also volunteers at Tulsa Girls Art School. Adrienne lives in Tulsa, Oklahoma with her husband Shawn, and daughters Mackenzie and Makayla and son Myles.

 

Kristen Davis
Chair of Board of Directors
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. 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 particpating member of The American Society of Pediatric Hematology/Oncology Vascular Anomalies Special Interest Group (ASPHO-VAC SIG).

Kristen lives in Maine, with her husband Marc Cerabona.  She has a college aged son Cole and daughter Riley. 

 

Lindsey Godar

Board Member, 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.  

 

Ashley McNamara
Treasurer, CLOVES Syndrome Community

Asley 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.

 

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