To: All EDNF Members
From: Elliot Clark, Chairman of the Board of Directors, and the Board of Directors
Re: Transition of Leadership Announcement
Date: August 30, 2010

Transitions are a time of mixed emotion. I am saddened to announce the departure of our long time President Cynthia Lauren who has worked tirelessly to advance the Ehlers-Danlos National Foundation. She has made a great contribution and we wish her well in her next endeavor.

I am equally excited to announce that EDNF has executed an agreement with the Coulter Companies, one of the most respected leaders in non profit association management. After studying this option extensively, the Board approved this option because of the combination of financial benefits, the availability of additional resources and their history of operational excellence. By entering into the agreement, we will be able to leverage their shared infrastructure cutting our fixed annual expenses by 35%. We will have at our disposal an Executive Director as well as a shared development (fundraising) resource, a web/social media support resource and an administrative support resource.

We will also be able to take advantage of the Coulter Companies’ long standing track record of operational excellence helping cause based organizations grow and achieve their goals. EDNF remains committed to its mission to raise awareness of EDS among patients, caregivers and health care providers and with more resources. More resource in development and more financial support will mean we can provide better programs to our membership and better fulfillment of our mission.

We welcome our new Executive Director Lesa Faris. Lesa joined The Coulter Companies in 2002 as director of resource development, and as associate vice president, is responsible for the solicitation and implementation of a broad range of activities that have fueled year-over-year increases in non-dues revenue for The Coulter Companies' client organizations she has helped manage. This includes sophisticated corporate partnership and sponsorship development, advertising and trade-show sales and other lines of revenue-generating activities unique to The Coulter Companies' portfolio of socially progressive, high potential nonprofits. (For a full bio click here.)

The offices will be moving to McLean, VA which will place us near potential government funding sources and significant research and learning institutions studying and teaching about EDS. The new address is:

• EDNF
  1760 Old Meadow Road
  Suite 500
  McLean, Virginia 22102

Other announcements will follow (for the text of a mutual press release in PDF format click here) and some short term transitional issues may arise and we apologize in advance for them and they will be brief.

I want to thank all of the volunteers who have done so much for the Foundation.  I want to once again thank Cindy, Debbie Ignacio and Ross Entrecchio of the Los Angeles office for their dedication, hard work and tireless efforts. 

I would like everyone to join us with optimism and look to the future of the Foundation and hope each day is a brighter day. 

Elliot Clark, Chairman of the Board of Directors

Goodbye EDNF—Goodbye Los Angeles

After six years at the helm of EDNF, I am taking my leave to move on. It has been a long, challenging, but highly rewarding time at EDNF. Since I started we have faced the tsunami, Hurricane Katrina, and one of the worst economic recessions in American history. However, since 2005 we have produced a first class series of medical information products; held ever-larger conferences; created awareness months and events; and so much more. We have gone from a mailing list of 600 to one of over 15,000. EDNF has led the way for public and professional awareness about EDS, more than ever in our history. Our accomplishments have inspired many others to follow in our footsteps—that is true success. We have had wonderful supporters that have helped us prevail, and during a time when so many other small nonprofits were not able to rise to the challenge and survive.

Our ability to persevere is due in no small part to some utterly outstanding volunteers. While other organizations brag about the fact they are 100% volunteer, did you know that EDNF was 98% volunteer? These people have given so much, above and beyond the call of any duty. I know all members of the EDS community will join me in acknowledging and thanking them for their hard work.

• Mark Martino: Design, writing, web interface, research, editing, proofreading, the list goes on. He has been hands down the most reliable and creative volunteer. He is a visionary and truly dedicated to the cause of EDS and its improvement, and EDNF has been more than fortunate for his gifts.
• Barbara Goldenhersh: Came on early to support us and we will be forever indebted for her help in upgrading Loose Connections, her part in developing the Hinge development team and ongoing work as editor. Barb’s wonderful heart and enthusiasm have allowed her to extend awareness of EDS in important tangible ways. Her endlessly cheery spirit is a gift and joy for so many that are scared and angry.
• Sue Jenkins: Has taken on a very crucial job literally on the front lines for EDNF. Questions, demands, referrals, hysteria: emails like this come to us with great frequency. Sue’s expertise, willingness to go the extra step and fill in wherever necessary has made her an invaluable resource. Her connections to the medical community are outstanding and a special benefit for EDNF.
• Liza Sauls: An unofficial ambassador to all coming to EDNF. She greets each new member of our boards with a kind, gentle and most of all supportive voice. This organization is indebted to her kindness and open-minded approaches to therapy and care.

There have been many more volunteers, and too many to list. As your work has directly contributed to EDNF, please accept my personal thanks for all you have done, for EDS particularly and in making a difference. You are an important part of the foundation's rich history, and part of our success through a quarter century of service. You are special people.

As of Friday, August 27, the EDNF Los Angeles office is closed. The Board of Directors, directed by Elliot H. Clark, has determined that the needs of this membership can be better met by transferring management to the non-profit association management firm in Virginia. Their address is above.

Debbie and Ross are moving on as well. I am sure you all join me in thanking them for their efforts to keep the office open and functioning. They have truly been the heart and soul of the office, and EDNF will not be as nice without them.

Best of luck, EDNF—

Cynthia Lauren

Offices are moving…

The Los Angeles office is closed as of August 27, 2010.

We wish Cindy Lauren, Debbie Ignacio and Ross Entreddicho happiness and luck in their future; they have worked hard for us day in and day out. The lives of all of us with Ehlers-Danlos syndrome have been bettered because of their dedication; their work will live on in the lives of everyone they've helped.

We’re thankful for our members' support, and thankful for your patience as the new staff learns about EDS and our needs as a community. Whatever changes are coming for the new EDNF, we’re proud of what we’ve accomplished as a member-driven and almost completely volunteer foundation.