Cloves Syndrome Community

A nonprofit organization

348 Donors

We promote support, research and education in order to improve the lives of people living with CLOVES Syndrome.   

Our vision is an improved quality of life for people living with CLOVES.


What is CLOVES Syndrome?

CLOVES Syndrome is an overgrowth disorder that affects multiple systems of the body.  CLOVES stands for Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/Skeletal/Spinal anomalies.  CLOVES syndrome is rare, progressive, complex and non-hereditary.  The degree of severity can range from mild to severe and can cause pain, difficulty with mobility, loss of function in body systems and an array of neurological complications.    There is no cure for CLOVES and there are limited effective treatment options.   CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS.  


How we work to improve the lives of people with CLOVES

Our current SUPPORT initiatives:  

  • Biennial CLOVES Family Conference 
  • Annual CLOVES Family Camp 
  • Family Assistance Program which provides financial support related to lifelong and long term medical costs
  • Back to School Bucks which provides financial assistance related to apparel and shoe modifications, adaptive clothing and shoes in multiple sizes
  • Maintain a comprehensive and up to date website at http://www.clovessyndrome.org


Our current RESEARCH initiatives:

  • In October of 2021, we are hosting a Virtual International Scientific Meeting for PIK3CA Related Conditions. This is the first meeting of this kind.
  • In 2020, we became one of thirty organizations in Chan Zuckerberg Initiative's Rare As One Network.  
  • In 2020, we supported the work of Dr. Ralitsa Madsen, PhD with a $20,000 research grant for her work on  "The systems biology of activating PIK3CA mutations in mosaic endothelial cell models." 
  • In 2020, we launched a patient powered registry for CLOVES + PIK3CA Related Conditions
  • In 2019, we donated $30,000 to Canaud Lab for the development of PROS animal models and testing PIK3CA inhibitors.
  • In 2017, we donated $20,000 to Boston Children's Hospital in 2017 to assist with funding three different projects.   Two projects involve PIK3CA animal models in mice and zebrafish.  The third project involves looking for risk factors predicting common complications in CLOVES, using data from people with CLOVES in the Lymphatic Anomalies Registry.
  • We are actively collaborating and networking with other PROS organizations, industry, clinicians and researchers to advocate for non-surgical treatment options for CLOVES.


Our current EDUCATION initiatives:

  • Annual CLOVES Awareness Day
  • Participation in annual Rare Disease Day
  • Four Leaf Clovers: A book for kids under 8 years old
  • Incredible You:  Our book for kids and teens about CLOVES
  • Ongoing outreach to schools, organizations, hospitals and media outlets. 



"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


Organization Data

Summary

Organization name

Cloves Syndrome Community

Tax id (EIN)

45-3056921

Categories

Health

Address

PO BOX 406
W KENNEBUNK, ME 04094

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