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- Our Annual Day/Night Golf Tournament was held on September 24th, 2016 where we raised just over $5,000 dollars. Thank you to our participants, sponsors, and volunteers, for another amazing year.
- Our team in Boston has started a Lymphatic Anomalies Registry. For more information click the following link: Children's Hospital Lymphatic Anomalies Registry
- For a downloaded copy of our brochure, click here to download the file.
- Boston Children's research team has found the genetic marker responsible for CLOVES Syndrome (Boston Children's will continue their research to find other treatment options. Currently surgery is our first level of defense to help manage the symptoms associated with this disease): Please read the press release: 5-31-12_Press_Release_-_Cause_of_CLOVES.pdf
- We have received confirmation that there are 2 Cloves patients with Wilms Tumor (childhood form of kidney cancer). Click here for Boston's announcement
- Scientists ID Gene Linked to Syndrome behind Elephant Man Disease: Click here for more information
- Genetic testing will be offered by Dr. Warman, the Medical researcher in Boston. Please click here for more information