Our Check in For Charity for January/February, 2022 is CLOVES Syndrome Community, which was established in 2009 by a mother of a child who was diagnosed with this rare condition after realizing there was no network for support.
What is CLOVES? CLOVES stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis. CLOVES is caused by a gene mutation and is extremely rare. There is no cure for CLOVES and as of right now, and there is very little treatment.
The vision of CLOVES Syndrome Community is an improved quality of life for those living with CLOVES syndrome. Their mission is to support, educate, empower, and improve the lives of those affected by CLOVES syndrome. CLOVES Syndrome Community 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. They also bring families together for Betsy’s Camp, an annual opportunity for community, fun and relaxation.
Donations from Check-ins will help fund research and resources to support those with CLOVES and their families. For more information, please visit clovessyndrome.org
Adalyn MacKinnel (Addy) was born April 7, 2017, with CLOVES and has gone through multiple surgeries which includes an amputation of her right foot. Addy is the daughter of Doug Meaney’s first cousin and resides in Waterford, CT. Every October Addy’s Run raises money for CLOVES.
EVERY FACEBOOK CHECK IN HELPS!