Board of Directors

Brenda J. Alexander
Secretary, CLOVES SYNDROME COMMUNITY

Brenda joined the CLOVES SYNDROME COMMUNITY online before it became a formal organization in the summer of 2011. She participated in small-scale fundraising efforts for CLOVES patients since 2002. In March 2011, Brenda became more actively involved in the CLOVES community through the CLOVES family conference held at Children’s Hospital Boston.

Brenda is a certified Elementary and Special Needs Teacher. She works in a public elementary school in Massachusetts as a Special Education Teacher with young students identified with learning disabilities. Additionally, Brenda is a community volunteer in a variety of child-centered organizations. Recent responsibilities include fundraising for the York Education Foundation, organizing Little League fund-raisers and celebration ceremonies, fund-raising for local Scout Troops, and running church auctions for Youth Ministry activities.

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 (5) was diagnosed with CLOVES at the HVMC at Cincinatti Children's Hospital.  During this time, Emily and her Adam, found CLOVES Syndrome Community, and became interested in advocating for their daughter.  

Emily has 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.  A stay at home mom, she enjoys being with her family and teaching dance classes a few days a week.  

 

Adrienne Davis Guier
Board Member, CLOVES SYNDROME COMMUNITY

Adrienne joined the CLOVES SYNDROME COMMUNITY in October of 2011. She has participated in various CLOVES events since 2002.

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.

 

Kristen Davis
Chair of Board of Directors
Executive Director of CLOVES SYNDROME COMMUNITY

Kristen Davis started the CLOVES Syndrome Community website and support system in 2009, after her daughter Riley was diagnosed with CLOVES. At that time, no formal organization existed to support families with a loved one with this rare syndrome. CLOVES Syndrome Community was developed with the understanding that when parents and loved ones are informed, empowered, and connected with others facing similar challenges, they will be better equipped to support their children’s, or their own, medical, emotional and physical needs.

Kristen is an advocate for people affected by rare diseases and chronic illnesses and enjoys collaborating with other organizations for people with complex vascular anomaly syndromes. Additionally, Kristen loves learning how current social media trends are affecting health care and patient advocacy. Her educational background is in Social work, social justice and English. Recent volunteer responsibilities have included Girl Scout Leader and Advisory Committee submissions reviewer for the Rare Children’s Storybook Project and Member of the Children's Hospital Boston Family Advisory Council (FAC).

Kristen lives in Maine, with her husband Marc, son Cole and daughter Riley.

 

Richard Fuisz

Board Member, CLOVES SYNDROME COMMUNITY
Richard Fuisz has been involved with the CLOVES Syndrome Community since 2011, and became a Board Member in February of 2017. Richard is currently a college senior majoring Bioengineering at Stanford studying DNA synthesis, computer science, and synthetic biology. Richard enjoys advocacy for people diagnosed with CLOVES and driving rusty old cars on the Pacific Coast Highway.
Richard currently lives in Palo Alto, California.
 

Amanda Martin

Board Member, CLOVES Syndrome Community

Bio coming soon!

 

Ashley McNamara
Treasurer, CLOVES SYNDROME COMMUNITY

Ashley joined the CLOVES SYNDROME COMMUNITY during the process of becoming a formal organization in the summer of 2011. She has participated in small-scale fundraising efforts for CLOVES patients since 2002.

Ashley is a certified public accountant and is the Director of Accounting at an oil and gas company. Additionally, Ashley serves on the board for the Tristesse Grief Center in Tulsa, Oklahoma and participates in various community events.

Ashley lives in Tulsa, Oklahoma with her husband Steve.

  

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