Support, Hope, Education.

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Mission:
CLOVES Syndrome Community supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome.

Vision:
An improved quality of life for people with CLOVES Syndrome

Goals:

  1. Provide information and resources to educate others about CLOVES Syndrome
  2. Foster and promote a supportive community
  3. Build and sustain a broad base of funding sources to support our mission and goals
  4. Utilize incoming funds to provide financial assistance to those impacted by CLOVES Syndrome
  5. Participate in and promote CLOVES Syndrome research to assist in a complete understanding of the disease.
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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 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 (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. 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). Kristen lives in Maine, with her husband Marc, son Cole and daughter Riley. 

 

Lindsey Godar

Board Member, CLOVES Syndrome Community

Lindsey is from St. Louis Missouri and has two sons Austin (17) and Zack (14).  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.  We’ve since travelled to Boston for two of the CLOVES Conferences. 

She is a senior sales rep 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

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.  She was previously the Director of Accounting at an oil and gas company and a Senior Audit Manager at an international accounting firm. Ashley lives in Tulsa, Oklahoma with her husband Steve and children, Loretta and Van.

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Our goal is to provide you with the most up to date, comprehensive and accurate medical information related to CLOVES Syndrome.

All medical material on this website is developed with oversight and direction from CLOVES Syndrome Community’s Medical Advisory Board.

Denise Adams, MD

Co - Director, Vascular Anomalies Center - Boston Children's Hospital

Dr. Denise Adams recently moved to Boston Children's Hospital. Of key interest to Dr. Adams, as an oncologist, is the improvement in care of patients with kaposiform hemangioendotheliomas (KHE). The team of experts has established a clinical registry for these patients to gain insight into the clinical characteristics of KHE patients and the long term outcomes of these patients. They also have a phase II FDA funded trial for complicated vascular anomalies and KHE patients are included in this trial. These tumors are rare but have a very high mortality and morbidity rate. It is important that the group learn more about the clinical characteristics, phenotype, biomarkers which can lead to further investigations and clinical trials.

Link to Dr. Adams' PubMed papers

Research Grants and Contracts

Phase II Study of Rapamycin for Complicated Vascular Anomalies. Food and Drug Administration. Sep 2009 - Aug 2013. #R01 FD 003712.

Ahmad Alomari, MD, MSc, FSIR

Co-Director of Vascular Anomalies Center atChildren’s Hospital Boston

Dr. Alomari has employed a superlative combination of clinical, radiologic and interventional skills, and has discovered several new conditions, including CLOVES Syndrome, and pioneered new approaches to treatment.

Link to Dr. Alomari's PubMed papers

Brooke Corder, MSW, LCSW

Children's Hospital Boston - Social Worker, Vascular Anomalies Center

Steven Fishman, MD

Co-Director of Vascular Anomalies Center at Children's Hospital Boston

Dr. Fishman is a full-time pediatric surgeon. His practice includes the full range of newborn and pediatric surgical care. He has a particular research and clinical interest in vascular anomalies, including hemangiomas and vascular malformations. This field is not well taught or studied in any of the classic disciplines of medicine. He is Co-Director of the multidisciplinary Vascular Anomalies Center at Childrens Hospital Boston.

He has a particular focus on developing an understanding and approach to visceral vascular anomalies. Though these anomalies are extremely rare, an international referral practice has facilitated the recognition of patterns in clinical presentation and opportunities for treatment. He has focused on developing evaluation and intervention techniques including innovative operative procedures for the treatment of visceral vascular anomalies. Recognizing the limitations of surgical techniques, he is also focusing on understanding the biologic mechanisms involved in the development and progression of these lesions. He has focused on known angiogenic modulators as well as metalloproteinases, having recently identified the likely importance of high molecular weight matrix metalloproteinases in patients with aggressive vascular anomalies. Dr. Fishman is the principle investigator on a phase I clinical trial which is well under way of a metalloproteinase inhibitor in patients with devastating lesions.

Dr. Fishman is the Secretary General of the International Society for the Study of Vascular Anomalies (ISSVA). He participates in the national and international education of specialists from multiple disciplines interested in the field of vascular anomalies as a frequent visiting professor and invited lecturer in various postgraduate symposia. In addition, he advises several patient/family-oriented support groups and frequently participates in their gatherings and clinics.

Link to Dr. Fishman's PubMed papers

Cindy Kerr MSN, CPNP

Children's Hospital Boston - Pediatric Nurse Practitioner

Darren Orbach, MD, PhD

Dr. Orbach received his BA from Princeton University, his MD from Cornell University Medical College, and his PhD from Rockefeller University. He completed a seven-year combined training program in neurology, diagnostic radiology and neuroradiology, followed by a neurointerventional radiology fellowship, all at New York University Medical Center. He is board certified in diagnostic radiology, neuroradiology and neurology. He is the Division Chief of Interventional and NeuroInterventional Radiology at Children's Hospital Boston.

Because Children's Hospital Boston draws patients with relatively rare cerebrovascular, spine, and extracranial head-and neck vascular malformations from all over the world, Dr. Orbach and his colleagues have had rich opportunities to deepen their understanding of pediatric vascular malformations and their optimal treatment. Several publications describing the relationship between CNS vascular malformations and more broad vascular anomalies have resulted, and several others are under way.

Link to Dr. Orbach's PubMed papers

Samantha A. Spencer, MD

Children's Hospital Boston - Orthopedic Surgery

Dr. Spencer is an orthopedic surgeon who specializes in congenital lower extremity disorders, lower extremity disorders and vascular anomalies.

Edward R. Smith, MD

Boston Children's Hospital - Neurosurgery

Dr. Smith is the Director of Pediatric Cerebrovascular Surgery at Boston Children’s Hospital (BCH). As a pediatric neurosurgeon with a practice focused on cerebrovascular disease and brain tumors, Dr. Smith sees many of the central nervous system (CNS) conditions found in association with CLOVES. Dr. Smith has been involved in the authoring of related state-of-practice papers (such as the recent moyamoya article in the New England Journal of Medicine) and has participated in the creation of clinical practice guidelines, including the American Heart Association (AHA) Guidelines for the Management of Cerebrovascular Disorders in Infants and Children.

In addition to his clinical work, Dr. Smith has an active research effort, with a laboratory that studies mechanisms of vascular regulation shared by both brain tumors and cerebrovascular disease. He is interested in the development of tests to better screen for the presence, recurrence and progression of these conditions using non-invasive biomarkers. His laboratory published the first report describing the successful use of urinary biomarkers to in this population. This research, supported by the NIH and national foundations, serves as the core of an ongoing 2012-2015 national 12-center trial to study urinary biomarkers in children.

Cameron Trenor, MD

Pediatric Hematologist/Oncologist;Vascular Anomalies Center at Children's Hospital Boston

Dr. Trenor is an active pediatric hematologist-oncologist. His practice focuses in bleeding and blood clotting disorders in addition to vascular anomalies. He is co-director of the Cerebrovascular Disorders and Stroke Program at Children's Hospital Boston.

Within the field of vascular anomalies, Dr. Trenor is focused on developing medical therapies to improve treatment and quality of life for patients. Dr. Trenor is the site principle investigator for the phase 2 trial of sirolimus for complex vascular anomalies, pioneered by Dr. Adams in Cincinatti. Dr. Trenor is developing other clinical trials for patients with hemangiomas and arteriovenous malformations. Also, he is actively developing a large registry to better characterize thousands of patients with lymphatic anomalies. Dr. Trenor lectures on vascular anomalies regularly, often to physicians in training and nurses, hoping to increase awareness and interest in this field.

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