In our daily hurry to get going and get things done, we can forget to reflect on how far we’ve come. In 1984 Nancy Hannah Rogowski was told “no one else has this condition.” She refused to accept it, and created a network for everyone with Ehlers-Danlos syndrome—diagnosed properly or not, treated properly or not—so they would know they weren’t alone, so they could find hope.

At the beginning that hope was only a vision of a few people, but that vision has borne amazing fruit. Since Nancy founded Ehlers-Danlos National Foundation in Michigan in 1985, the Foundation has grown from the ideas of one to the ideas of many. The drive to connect to other families with EDS has grown from Michigan to the nation, and from the nation to the world.

Just think of the thousands of people who are reading this right now, and how many more know and care about EDS than just 25 years ago. As an organization EDNF has changed with that growth while always holding on to Nancy’s vision. EDNF’s success has inspired new groups and causes for the EDS community, but the Foundation has led the way from the beginning.

When you look toward what you want, remember to see how far you have come. You have done so much! Your caring and your past support have made the present better, and your commitment to change will shape the future.

EDNF is asking for your generosity in this fundraising letter for our special Anniversary Resource Fund. If we have ever helped you or a friend in any way...

• Ever connected you to a resource of any kind…
• Been part of the community that “gets it”…
• Shared an idea…
• Printed out an article…
• Shown someone any of the Medical Resource Guides…
• Worn a rubber wristband…
• Read or even forwarded a copy of the Hinge, or an issue of Loose Connections…
• Attended a conference…
• Or just have been inspired by one of the EDSers around you…

We ask for your help. Keep us going and growing.

And spread the word about EDNF by sharing this with your friends and colleagues. All it takes is a brief visit to EDNF.org for anyone to discover reliable and current information about treatments, research, advocacy reports, member-driven activities and community. All it takes is a little help from you.

It has been a tough time: but EDNF has never been in a better position. Our web site is richer and fuller with more and more traffic, our information and educational materials earn more respect with each publication. The best in EDS research and care are coming to our 2010 National Learning Conference in Baltimore, July 15-17.

EDNF has a lot of work to do. There is still widespread resistance to the reality that EDS is probably not rare and that it covers a far wider spectrum of symptoms than commonly thought. And it is you who give the foundation the tools to change that ignorance: your courage to speak up and share your stories of struggles and triumphs, your frustrations and your accomplishments.

The need for EDNF to move forward has never been more exciting or urgent. Your contribution now will sustain services to our dynamic and diverse community as EDNF moves beyond the first 25 years. Your gift now will make sure EDNF will still be here when new treatments are found and when one day the cure is discovered.