CLOVES Syndrome Community applied for and was selected to receive an additional year of funding ($150,000) and resources with the Rare As One Network! This patient-led research network has been transformational, awe-inspiring and humbling to be a part of. We are truly grateful! “In 2019, the Chan Zuckerberg Initiative launched the Rare As One Network,
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We are pleased to support the second year of Dr. Bryan Sisk’s and Dr. Anna Kerr’s research study titled “Vascular Anomalies Communication” (VACOM) with a $9408 grant. See the details below for an update. They will also be hosting an update webinar through CLOVES Syndrome Community at 1pm EST on Saturday, March 12th. Register for
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October 28th-29th 2021 was the first International Scientific Meeting for PIK3CA Related Conditions which was hosted and sponsored by CLOVES Syndrome Community. We hosted this meeting as part of our patient led PIK3CA Related Conditions Research Network development with the Chan Zuckerberg Initiative Rare As One Network. The meeting was a great success and we
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Our research partners in the UK and Europe–Drs Hannah Brunsdon, Ralitsa R Madsen, Robert K. Semple, E. Elizabeth Patton, and more–just had a pre-print published detailing their work with Zebrafish and the PIK3CA gene–a project made possible by seed funding from CLOVES Syndrome Community! For reference, a pre-print is a scientific or scholarly research paper
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from Dr Ralitsa Madsen & Team Dear CLOVES Syndrome Community readers, As we approach the festive season, I am once again excited to share this year’s update with you. Writing this newsletter is always one of my favourite responsibilities of the year. It is a chance to step away from the endless to-do-list and reflect
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Josh Beauregard is a Corporate Controller, a CPA, and Dad to Maddox (13) and Kiki (10). He’s also a caregiver-member of our CLOVES Community, and was kind enough to write this blog post for us, helping demystify the changes coming to charitable giving deductions in the United States in 2026. Some of the changes may affect
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We are excited to announce that for 2025, our community will have TWO Summer Camp opportunities to choose from! Read on for details. Betsy’s Family Camp & Retreat CSC’s annual summer camp for people with CLOVES and their families. Originally called “CLOVES Camp”, the name was changed to Betsy’s Camp in 2020 in memory of Betsy
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The Board of Directors of CLOVES Syndrome Community today announced the appointment of Lauren Beauregard as its new executive director, succeeding Kristen Davis who has guided the organization since 2009 to become a foremost patient-led advocacy organization for CLOVES Syndrome. Following a comprehensive search, the Board of Directors selected Lauren in January of this year,
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Written by: Ralitsa Madsen At the time of writing this newsletter for CLOVES Syndrome Community (CSC), I realise that 29 February is just around the corner (24h and 15 minutes to go!). This is a special date for CSC and the entire rare disease community. It is this year’s worldwide Rare Disease Day – a
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Research study is open to participants worldwide to advance understanding and treatments for rare disease causing CLOVES Syndrome. December 1, 2023 — Today, CLOVES Syndrome Community and the National Organization for Rare Disorders (NORD) launched a study with global reach to research CLOVES Syndrome, which causes mobility challenges, pain, vascular anomalies and progressive overgrowth. CLOVES
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CLOVES SYNDROME COMMUNITY EXECUTIVE DIRECTOR KRISTEN DAVIS TO STEP DOWN NEXT YEAR KENNEBUNK, ME — (May 16, 2023) – The Board of Directors of CLOVES Syndrome Community today announced the planned transition of its longstanding Executive Director, Kristen Davis. Kristen informed the Board in January of her decision to step down as Executive Director, with her
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We’re pleased to announce a $100,000 research donation to the University of Edinburgh – Patton Lab – to develop zebrafish models of CLOVES. Dr. Hannah Brunsdon has written a lay summary about this project below. “People with CLOVES syndrome commonly have fatty growths, abnormal formation of blood vessels and lymphatics, dark skin lesions, and
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Since 2021, CLOVES Syndrome Community has supported the work of Dr. Bryan Sisk, Assistant Professor of Pediatric Hematology and Oncology at Bioethics Research Center with conducting a research study titled “Vascular anomalies communication” (VACOM). Vascular anomalies are a group of rare disorders that can be disfiguring, painful, and even life-threatening. However, no researchers have explored
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