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Copyright 2010, All Rights Reserved, EDS Network C.A.R.E.S., Inc.

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Michele Hegler - Board of Directors

web site by ~ Lynn M. Sanders

This devastating connective-tissue disorder, EDS, wreaks havoc in the lives of those afflicted. Too many have died needlessly; too many have undergone futile operations; and too many have pain, mobility, and depression issues. We need better diagnostic tools, better patient support, better lines of communication, better treatments, and much more research. This is Michele’s passion and her mission.

For many individuals, volunteer positions are taken lightly or put on the bottom of their priorities. For Michele, helping others with EDS rates right below family (and sometimes her family would challenge that).

Four generations of her family (ages 13–55) have passed away from complications of VEDS, including her mother at the age of 33. Unfortunately not one had been diagnosed with EDS while alive. However, because of Michele’s efforts, they were all diagnosed with VEDS post mortem due to genetic testing on frozen aortic necropsies. That’s why she strives to help people get that all-important diagnosis––before complications arise.

Michele’s volunteer experience includes but is not limited to the following:

Ehlers Danlos National Foundation

2003–2008

Founded Greater Houston Group, one of the first chartered support groups, and served as president through 2008

Personally delivered more than 250 CD’s and 750 brochures to local healthcare professionals and continually presents briefings to medical personnel in the medical Mecca of Houston, Texas.

2004

Represented EDNF at the three-day American College of Rheumatology Conference, conversing with many of the 10,000 attendees and distributing over 2,000 CDs and thousands of brochures.

2005

Created 200-page Preparing for Your VEDS Patient book, complete with description of VEDS characteristics, pertinent articles, and samples of information needed so that doctors can better understand and manage their patient’s VEDS. Most impressive, it was hailed by research physicians and, subsequently, distributed to study participants.

2005–2006

Served as Midwest Regional Coordinator, managing, motivating, and grooming support groups in eleven states.

Managed the EDNF Communications and Pain Advocacy Project resulting in a detailed 55–page communications document for group leaders and their members.

Received Certificate of Appreciation for her work on the communications document.

2006

Conference Director for the EDNF National Learning Conference––the most successful one in terms of revenues earned. In addition, she was Instrumental in encouraging medical experts to not only speak at the Conference, but to join the Professional Advisory Council.

Received the Outstanding Volunteer Award

2007

Created a revised Being Prepared for Your EDS Patient book for all types of EDS without articles but with references to pertinent articles and with templates so patients can keep their information in one place or hand to doctors on that critical first visit.

2008

Conference Director for the EDNF International Learning Conference the most successful one in terms of attendees. In fact, she motivated more than 350 persons from Egypt, Japan, Dubois, Iceland, England, Italy, Bahamas, Jamaica, Canada, Norway, Denmark, Sweden, and across the United States to attend. As a result, EDS information was truly distributed across the world.

Received the Profound Gratitude Award for her efforts on the Conference

Writing Credits

Michele has over 150 writing credits, including fiction and non-fiction books; computer software and engineering documents; magazine articles; newspaper articles; and is currently collaborating on a medical book.

Community Outreach

Michele has always been active in her church and community. Perhaps, the projects she enjoys most are working with the Thai community––including yearly mission trips to ChaingMai and Udon Thani––and judging science fairs, from grade school through high school.

These projects; as well as her 6 children, 17 grandchildren, and an

understanding husband, keep her hopping. However, she still loves those late night calls from her EDS family and looks forward to joining the three other board members of the exciting Ehlers-Danlos Network C.A.R.E.S. organization.