Support - Research - 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.

 

2019 Year In Review

 

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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.

 

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
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

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.

 

Sara Robertson

Board Member, 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.

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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 at Children’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

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

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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Justin Luczejko

Justin is a single father, a patient and an advocate diagnosed with CLOVES Syndrome. He is 40 years old and has lived with this disease since birth, but was only diagnosed with CLOVES two years ago at Children's Hospital in Philadelphia. Previously diagnosed with Lymphangioma and Klippel Trenaunay Syndrome, Justin has been treated his entire life for a disease in which doctors in both holistic and western medicine fields have had little to no answers. Most of them: perplexed! Throughout this long and tenuous journey, Justin has had 18 surgeries in his life ranging from craniofacial, debulking, sclerotherapy, CO2 laser and more.

Justin's diagnosis with CLOVES has been a life-changing experience for he and his family. Now in his second year of Sirolimus therapy, he and his Oncology team at CHOP have reported significant progress and have confirmation that this therapy has shrunk some of his most problematic lymphatic malformations.

Because of being sick and unable to hold down various jobs, it was in direct correlation with CLOVES that Justin founded his own business at the age of 17. For 15 years, he was both Publisher and Editor-in-chief of a multinational music magazine that he started in his bedroom. At the age of 25, Justin went on to sign an exclusive distribution deal that would find his pet project in Borders, Barnes & Noble, Tower Records and hundreds of Mom & Pop book and record stores in over 25 different countries.

Returning to finish his degree in Disability Studies, his goal is to work with children and adults both with rare and terminal diseases. Justin will proudly tell you himself that finding the CLOVES community has been the biggest single improvement of his life and hopes it becomes yours as well. Justin says that his single defining moment as a parent was being able to take his seven year old daughter to meet other individuals affected by her father's disease. He says that it has helped instill true empathy in his daughter and brings his life-long battle with this horrendous disease full-circle.

 

Jennifer Padilla

Jenny Padilla is currently a stay at home mom, but was previously a NICU nurse. Her son Victor is almost six years old. She was able to attend the conference in Boston, when Victor was just 6 months old and was amazed to meet other children, teens and an adult with CLOVES. Jenny quickly realized that she could help support the organization through fundraising and by raising awareness. Jenny has organized many small and large fundraisers and has been a great resource for other families who want to participate that way.  Jenny says that her family has used CLOVES Community at times when they needed emotional support or help navigating life with a sick child. Jenny says that she couldn’t imagine life without this wonderful community, and their support towards all involved. This is the primary reason she has chosen to join the Family Advisory Council.

 

Lindsay Passodelis

Diagnosed with CLOVES at age 14, Lindsay has been involved with CLOVES Syndrome Community ever since.  Now several months out from graduating from the University of Pittsburgh, she works as a Medical Social Worker in Pittsburgh, PA. Lindsay is dedicated to spreading awareness about CLOVES and advocating for this syndrome and for those affected.  She is dedicated to making connections with other patients and families and values the relationships made within CLOVES Syndrome Community.  

 

Learn more about the Family Advisory Council here.

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