I am the mother of 2 daughters, one of whom suffers from Ehlers-Danlos syndrome.  When my daughter was diagnosed with vascular EDS, I went through a very difficult time.  I experienced an immediate sense of need.  I needed to find out more information, to speak with others that had EDS, to find the most knowledgeable EDS doctors I could for her, and I needed to find her a cure, or at least some form of treatment.  During the years since her diagnosis, I have realized that I am not alone, and that so many others with EDS have the same needs.  I feel that the only way to get our voices heard is to join together and do all we can do to get EDS on the radar screen of every doctor, researcher and politician.  I have also come to realize that there is a lot of interest in the field of EDS treatment research.  This interest is a welcome change for me, as for so long all we heard is there is nothing we can do.  I hope that one day soon EDS will be better understood, more easily diagnosed and that there will be some form of treatment for everyone that suffers from EDS.

I am continually driven in my quest to find treatment and spread awareness about EDS by a simple interaction with my daughter that is always in the forefront of my memory.  That driving memory is of my daughter getting in one of her many ‘accidents’ and asking me, “Mommy, why couldn’t I have something that doctors already know how to fix?”  I looked into those big blue eyes of hers and said, “I don’t know, but I do know that I work each and every day trying to figure out how to find you a cure.”  Her response was the most simple and sincere “Thank you mom!” that I have ever heard.

No child should have to thank their parent for trying to find them a cure for such a devastating disorder.  I know that I am doing all that I can to help her, and the many others that suffer from EDS.  I have also come to learn that no matter how small or large of a part that we all spend promoting EDS awareness, support and research, that it all adds up.  Together we can, and are, making a difference.

Since my daughter’s diagnosis in 2005 , I have been very actively involved in promoting EDS awareness, providing support for those whose families or loved ones are affected by EDS, and seeking funding for EDS research.  Additionally I am a big believer in community service and volunteer with numerous other organization, especially our local school PTA.

2005

Awarded the President’s Volunteer Service Award by President George Bush

Ehlers-Danlos National Foundation

Co-Chair EDS National Awareness Committee – produced many materials to promote awareness of EDS nationwide though Public Service Announcements, Press Releases and the General EDS Patient’s Brochure. 

President of Looselinks – Atlanta Area EDS Support Group- Georgia ENDF Branch.

2006

Renee worked with the office of Hon. Tom Price of Georgia to get May added to the Congressional Record at the first annual Ehlers-Danlos syndrome (EDS) Awareness Month.   On May 19th, Hon. Tom Price joined our cause urging Congress by letting them know “It is imperative that, in the absence of a cure, we in Congress join hands with the healthcare community to focus more attention on this matter.  Accurate detection and sustained treatment will lead to a more fulfilling life for those afflicted with EDS.“

Awarded – Volunteer of the Year at the 2006 EDNF National Conference in Houston.

2008-2009

PTA Board of Directors – Secretary

Education-BS- Medical Technology University of Buffalo-SUNY

Work History- St. Mary’s Hospital, Rocherster, NY,

                         Kodak, Rocherster, NY

                         Johnson & Johnson, Rochester NY

                         Immucor, Inc, Norcross, GA

                         Fulton County Board of Education, Atlanta GA and Oswego District #308, Oswego Il.

Renee Hutchings