RI Golf Tournament & Some Interesting Things in the Works

Last Saturday, October 6th, was the 5th Annual Barbara Croker Golf Tournament. There were over 120 in attendance (over 90 of them golfers) and it was the first year the event had a corporate sponsor, McShawn’s Pub of Cranston, Rhode Island, and many individuals and local companies that sponsored a hole and donated items and gift certificates for the raffle. 

 
As always the Rhode Island Dercum's Fundraiser group did an excellent job.  There is a lot of time and energy the committee puts in to get this event up and running every year and many of you will never know the people who do this as a labor of love for their friend and/or family member, Barbara and in turn for all of us suffering from this disease, but we all owe them a bit of gratitude for all they do.  After 3 years of attending the events RIDF puts on, it still amazes me how well they are organized and how much work they are all willing to do to get the job done. 
 

This all being said, there is always a point where I start to get teary eyed and it is usually when all the kudos are going out or when Barbara gets up and talks (and thankfully did not make me get up there with her this time – thanks Barb!). This time, I think I was having a little more emotion throughout the event because I realized just how much all these people who are not directly affected by our disease are so willing to help out and the human connection that is out there if we just open our eyes and hearts.

 
OK, enough sappiness.  Let’s get down to business.  Our biggest advocate, Dr. Karen Herbst, got up and spoke.  She talked about some of the things she touched on a year ago and probably spoke about at the conference but there are a couple of things in the works that are helping her indicate more about this disease. 


She spoke (and there was a great banner with all the information up) about the imaging that took place in Texas on 3 woman with Dercum’s.  The imaging was done with using NIRF (near-infrared dye – to read more about this check out this link: 

http://uthealth.technologypublisher.com/files/sites/p62-64_eva_sevick.pdf)


Using this method, they were able to look at how the lymphatic system was working (or in DD’s case not-working).  The study is yet to be published but when it is we’ll be sure to get the link up.

 
Also, there has been some updated in the genetic testing of two families that have known genetic link of DD.  Dr. Herbst said that there were many genes that the DD connection could be on and she was given a list of them to go through.  She wants to be thorough and make sure she misses nothing so this will be a long process.
 

Best wishes, Dr. H and thanks for all you do. If I got anything wrong, go light on me, I have DD J
.