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Who We Are

Who We Are

What is CLOVES Syndrome Community

 

In 2009 the mother of a child with CLOVES syndrome started a website and an organization, after she realized that no such resources existed for families and people with CLOVES. 

The vision of CLOVES Syndrome Community (CSC) is an improved quality of life for those living with CLOVES syndrome.   Our mission is to support, educate, empower and improve the lives of those affected by CLOVES syndrome.  

CSC does this by cultivating a thriving patient community, convening medical and family conferences, publishing books for children,  funding medical research and assisting families with long term medical costs.  We also bring families together for Betsy’s Camp, an annual opportunity for community, fun and relaxation.   CLOVES Syndrome Community is part of the Chan Zuckerberg Initiative’s Rare As One Network— a group of 30 patient-led organizations that are  driving progress in the fight against rare diseases.  We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions. CSC’s stakeholders are international and include: Individuals diagnosed with CLOVES syndrome and their families, friends, and caregivers; physicians and medical and allied health professionals; researchers; therapists; teachers; biotech and pharmaceutical companies.  CLOVES Syndrome-related foundations and nonprofit organizations; and individuals with PIK3CA Related Conditions and their associated patient advocacy organizations.


Testimonials

 

We are very grateful for the help and support from CLOVES Syndrome Community. The journey through this diagnosis has not been an easy one. Almost every aspect of our life has become complicated. But CSC has been a major support and help in getting knowledge and experience from each of the CLOVES families, the screening guidelines and of course the financial assistance.”

– CLOVES Family

CSC has been a lifeline to our family.

– CLOVES Family

CSC’s culture truly feels like a COMMUNITY, not an organization.  It feels intentionally inclusive and this allows for people to participate and benefit in ways that are most comfortable for them.

– Mom of a child with CLOVES

CLOVES Syndrome Community has been a saving grace for our son. We likely wouldn’t be aware of treatment options currently available, or have the screenings that have helped us to stay on top of his care and give him the best life we can, had CSC not existed!  We have met so many amazing families through this community that have given us so much hope for our son’s future.  This community is bonded and is stronger together in the struggle to make our needs known and more treatment options possible.  This organization is beyond a blessing and we are so grateful for all of the information and support that comes from this amazing organization.

– Jenny 

Mission and Goals

 

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.

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.

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.

Alice Fuisz
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.

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.


Scientific and Medical Advisory Board

 

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 Scientific and Medical Advisory Board (SMAB). 

Denise Adams, MD

  • Director of Complex Vascular Anomalies Program (CVAP) at Children’s Hospital of Philadelphia

Dr. Denise Adams is a pediatric hematologist oncologist in practice at Children’s Hospital of Philadelphia.  Dr Adams will be leading a cutting-edge, multidisciplinary program that seeks breakthrough treatments and cures for children, adolescents and young adults with rare, life-threatening tumors and malformations of the vasculature, which includes the arteries, veins, capillaries, lymphatics and combined lesions. Of key interest to Dr. Adams is the improvement in care of patients with complex vascular anomalies.  Dr. Adams describes her philosophy of care as this . “Since my first high school biology class, I have wanted to be a physician and since residency my passion has been the care of chronically ill children. In fellowship, I found a new passion and goal…to care for children and young adults with vascular anomalies. This was a spectrum of diseases with limited treatment options and high morbidity that needed the care of physicians with keen interest in discovery to improve their outcomes. This is my mission.”

Guillaume J.M. Canaud MD, PhD

  • Professor in Medicine
  • Head of the Overgrowth clinical unit at Necker Enfants Malades Hospital, Paris, France
  • Head of the research laboratory “Precision medicine in rare diseases affecting the mTOR pathway” at Institut Necker Enfants Malades, Paris, France

Guillaume Canaud is a MD, PhD working at Renal Division of Necker Hospital in Paris. He did his medical school in Montpellier and moved to Paris in 2002 to perform his Residency in Nephrology (2002 to 2007). He became Senior Resident at Renal Division of Necker Enfants Malades (Prof. Legendre) in 2007. He spent four years from to 2008 to 2012 in the laboratory of Dr. Fabiola Terzi (INSERM U1151, Necker Enfants Malades Hospital), where he obtained his PhD degree in molecular and cellular biology. Then, as postdoctoral fellow, he joined the Joseph Bonventre’s Laboratory (Harvard Medical School) from 2012 to 2014 developing a project on the molecular mechanisms of chronic kidney disease progression. He rejoined Prof. Legendre’s team as Associate Professor in 2014 and opened his own research group dedicated to translational medicine. He obtained a very competitive European Research Council (ERC) starting grant (2015) for his research project on kidney and an ERC Proof of Concept Grant for his translational research proposal in rare diseases (2016).

Recently, Guillaume and his group, identified and reported in Nature a very promising therapeutic strategy for patients with a rare genetic disorder called PIK3CA-Related Overgrowth Syndrome. He published his work as first or last author in top leading medical and scientific journals such as Nature, The New England Journal of Medicine, Nature Medicine, Science Translational Medicine or Proceedings National of the American Science. He is the inventor of 10 patents, and received numerous awards including the Prize Jean Lecocq of the French Academy of Sciences (2018), the Jean Hamburger Prize from the City of Paris (2019) and the Eloi Collery Prize from the French Academy of Medicine (2019, highest distinction).

In 2019, Guillaume became full Professor of Medicine at Necker Hospital/University Paris Descartes and created the first multidisciplinary unit dedicated to patients with overgrowth syndromes. In addition, he launched a private/public consortium (acronym COSY: Cure Overgrowth SYndromes) to improve the care and outcome of patients with overgrowth syndrome that was awarded with 9.4 M€ grant from the French government.

Kim M. Keppler-Noreuil, MD

  • Professor of Pediatrics 
  • Division Chief of Pediatric Genetics & Metabolism
  • Director of Genetics & Metabolism, Waisman Center
  • University of Wisconsin Hospital and Clinics

Kim Keppler-Noreuil, MD joined the Division of Genetics and Metabolism, Rare Disease Institute at Children’s National Medical Center as Professor of Pediatrics in November 2018 after her tenure at the National Human Genome Research Institute/National Institutes of Health as Clinician Associate Investigator from 2012-2018. Dr. Keppler-Noreuil completed her pediatric residency at the Arkansas Children’s Hospital, University of Arkansas for Medical Science, and her fellowship in Medical Genetics in the Department of Pediatrics, University of Alabama. She was on faculty as Professor of Pediatrics, Division of Medical Genetics at the University of Iowa Hospitals & Clinics, Clinical Director of the Iowa Registry of Inherited and Congenital Defects, and Program Director of the Medical Genetics Residency Training Program up to 2012. She also served as Co-Director of the Medical Genetics Course for the first-year medical students. She has been actively involved in patient care, teaching and clinical research during her career.

Dr. Keppler-Noreuil’s clinical and research interests have included clinical delineation of multiple malformation syndromes, and studies of epidemiology and pathogenesis of birth defects, inherited and chromosomal disorders. As the Clinical Director of Birth Defects, Iowa Registry for Congenital & Inherited Disorders (IRCID) from 1997-2012, she oversaw cases ascertained by the IRCID, and as Co-Investigator contributed to the development of case classification guidelines for the National Birth Defect Prevention Study (NBDPS), a multicenter study of genetic and environmental risk factor of over 30 major birth defects, as well as being the reviewer /classifier for NBDPS cases. Her recent research involving the Centers for Birth Defects Research and Prevention (CBDRP) data have been descriptive and genetics studies of cloacal exstrophy, Dandy-Walker malformation and hydrocephalus.

More recently, Dr. Keppler-Noreuil has led studies of clinical characterization, genetic studies, and therapeutic interventions, namely clinical drug treatment trials for somatic overgrowth and vascular malformation disorders, including Proteus syndrome and PIK3CA-related overgrowth spectrum (PROS). She and her colleagues at the National Human Genome Research Institute (NHGRI) completed a Phase 0/1 clinical drug treatment trial with an AKT1 inhibitor for Proteus syndrome, Pharmacodynamic study of Miransertib in individuals with Proteus Syndrome in the American Journal of Human Genetics in 2019. In addition, with colleagues from NHGRI, Cambridge University and University of Dijon, they completed and published results of an open-label drug treatment trial for PROS, including patients with CLOVES syndrome: Safety and efficacy of low-dose sirolimus in the PIK3CA-related overgrowth spectrum in Genetics in Medicine in 2019. Her published studies of PROS and Proteus syndrome comprise descriptive analyses of craniofacial abnormalities, cardiac, risk factors for thromboembolism, and prevalence and complications of vascular malformations and tumors.

Julie C. Sapp, Sc.M., C.G.C.

  • Genetic Counselor
  • Clinical Genomics Section
  • National Institutes of Health

Julie Sapp works as part of a multi-disciplinary research team where she draws upon her genetic counseling training and over a decade of behavioral science research experience to promote the integration of genomics into medical practice. The diverse clinical research portfolio of the laboratory she works in and her role as primary clinician working directly with research participants has positioned her to investigate a varied set of important social and behavioral questions related to the practice of clinical genomics and genetic counseling. Her work in this area has included qualitative and quantitative investigations of social and behavioral constructs such as the psychosocial impact of genetic disease, patient attitudes and beliefs, decision-making, research ethics, and informed consent. More recently, she has extended her early work to include applying these approaches to understand how best to meet the clinical demands of the expanding role of genome and exome sequencing and how to maximize the utility of genomic findings for both patients and practitioners. Her research focus in these efforts is to investigate the clinical utility of genomic techniques to develop best practices for the return of results and inform future studies of the expanding role of genomics.


Family Advisory Council Members

 

Lauren Beauregard

Lauren lives in the Pacific Northwest with her husband, two kiddos, and a very feisty cat named Calliope. She became involved with CLOVES Syndrome Community shortly after the birth of her daughter, Kiki, in 2015. Lauren is the author of Four Leaf Clovers, a book about life with differences for young children written in collaboration with CLOVES Syndrome Community. When she’s not busy with mom life, she publishes adult fiction under the name Elle Beauregard.

Robynn Kuhns

Robynn lives in Colorado with her husband and daughter Ellena, who was born with CLOVES in 2007.  She is a stay at home mom who has been fundraising yearly for CLOVES, with Ellena, and their Loaves for CLOVES event.  The CLOVES Syndrome Community has been a great place for them to funnel their interest in helping others with CLOVES.

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.

Kai Rehder

Kai was diagnosed at birth with Klippel Trenaunay Syndrome, and has since had physicians suggest an updated diagnosis of CLOVES. He attended his first support conference in 2012 and quickly realized how important the community is for learning about this disease and how to manage it. He has participated in several focus groups with pharma companies to help them learn about the unique needs and challenges that CLOVES patients face. His background in biotech has been enormously helpful for digesting scientific literature and communicating with medical professionals and he hopes to be able to help empower the CLOVES community members to do the same. Kai recently moved to the Seattle area from the San Francisco Bay Area and is settling into his new home and exploring the Pacific Northwest.

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.

Lindsey Johnson Edwards

Lindsey Johnson Edwards is a Master’s student at Dallas Theological Seminary. Lindsey was diagnosed with Klippel Trenaunay Syndrome at birth before she was re-diagnosed with CLOVES Syndrome as a teenager. Because of her life with CLOVES Syndrome, Lindsey has an interest in researching and writing about suffering, disability, and human flourishing. She hopes to earn her PhD in Theology and venture into researching theological bioethics. In the meantime, Lindsey is excited to advocate for this community and promote the flourishing of  CLOVES patients and caregivers.

Learn more about the Family Advisory Council here.


Rare as One Network

 

We’re part of the Chan Zuckerberg Initiative’s Rare As One Network — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.

The Chan Zuckerberg Initiative’s Rare As One Project aims to strengthen the efforts of patient-led groups. It will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts. Working in partnership with the rare disease community, the Rare As One Project will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.  No one is more motivated than patients to drive progress against their disease. We’re proud to be creating a patient-led research network to accelerate research and find treatment options for people with CLOVES and PIK3CA Related Conditions.

CLOVES Syndrome Community, in collaboration with Dr. Denise Adams of Children’s Hospital of Philadelphia, Dr. Jean Zhao of Dana-Farber Cancer Institute and Dr. Miikka Vikkula, Co-Director of de Duve Institute, is planning a virtual International Scientific Meeting for PIK3CA related conditions.   We will meet virtually on Thursday October 28 and Friday October 29, 2021 from 9am – 2pm EST.  Please sign up here to receive information about registration process, abstract submission timeline and agenda.

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“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
– Margaret Mead