Why did I accept a Directorship of EDNF?

As a doctor who specializes in connective tissue disorders, I have long seen those with EDS.  In years past, making the diagnosis for us was easy but we had little to offer in the form of treatment.  On the other side, the journey taken by those with EDS to even get to the diagnosis was daunting.  While a diagnosis was a positive step forward, we left such individuals on a dimly-lit path ahead.  We have learned so much from those affected by EDS.  It became clear that we not only needed to serve the individual patient but the population as a whole.  We need to do better by educating other healthcare professionals about recognizing EDS and initiating dialogue to improve the lives of such people.  Through the EDNF whose mission is largely information, we can begin to educate healthcare professionals by sending out information, making it more readily available, and empowering the patients themselves.  Once identifying expertise in the various medical fields, we can begin to talk and formulate better ways to treat…EDNF can be the focusing lens through which this can happen.

What skills and experience do I bring to the position?

I have little organizational experience to offer the Board but what I have is the keen insight into the many issues faced by those affected by EDS and the vision of how to address the many needs still left unmet.  My experience with hundreds of individuals with EDS has identified the many, many, many issues that still remain.  These are the questions I can challenge the Board with and help identify solutions to move forward.

What do I want to achieve as an EDNF Board Director?

EDNF must remain a support organization for those with EDS.  It must continue to offer accurate information and a place where people can ask questions and get the RIGHT answers.  Although research is important, the lack of knowledge from today’s (and frankly tomorrow’s) healthcare providers is potentially harmful in that many will go unidentified or be given the wrong types of therapies potentially doing them harm.  This is a war of information fighting the lack of information and the wrong information (yes it is 1 against 2 but we are strong!).  EDNF can only hope to identify these issues, and make plans to move forward.  Any group is as strong as its members.  We need YOU involved to spread the information and provide support.