LATEST EVENTS

6th Annual Day/Night Golf Tournament 9/22/2018
Four man Captain's Choice
* Electronic lighted balls to be included (one for each player) with the team entry fee.
* Each team member has one mulligan for both the day and night rounds, only one mulligan is allowed per play per round.
* Each team will have a string for one time use during the night round.
* Additional lighted balls will be available for $10.00 each for any lost balls.
* Please make sure that each player brings their own small flashlight.
* Two flights will be determined off the day round scores.

LATEST NEWS

OTHER NEWS

  • 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.