Latest Events

8th Annual Day/Night Golf Tournament 
Four man Captain’s Choice
We are currently discussing fundraising with our board members. Due to COVID, we may have to cancel our tournament this year. If this is the case, we will post virtual fundraising opportunities.

Latest News

  • Apeslib is a newly introduced drug trial – details forthcoming.
  • For an updated copy of our brochure, click here to download the file.

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.