The EDS Awareness Campaign is the only annual event to promote EDS Education on a worldwide scale.  The major EDS organizations of the world are joined forces in 2002 for the first-ever EDS Awareness Month to educate people about Ehlers-Danlos Syndrome. 

• When will the campaign take place?

• What organizations are sponsoring the event?

• What can I do to help?

• How can I donate to the campaign?

Click here to read the 2002 Press Release.

When will the campaign take place?

The first campaign took place during the month of February 2002.  February has been adopted internationally as EDS Awareness Month by worldwide EDS organizations.  Click here to read an overview of the 2002 EDS Awareness Campaign.

Another campaign is scheduled for February 2005.  Watch this site for details to come soon.

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What organizations sponsored the event?

Listed Alphabetically:

• Canadian Ehlers-Danlos Association (CEDA).  Volunteers from CEDA mailed out information kits to doctors within Canada.
   

• EDS Today. EDS Today led the Awareness Campaign, coordinated the mailing list database, sponsored the mailing costs, and maintained the website.
   

• Ehlers-Danlos Foundation of New Zealand.  Volunteers from the Ehlers-Danlos Foundation of New Zealand mailed out kits to doctors within New Zealand and shared information about the awareness campaign during their annual conference in February.
   

• Ehlers-Danlos National Foundation.  EDNF provided 2700 copies of their informational brochures and granted reprint permission for an additional 1800 to be reproduced by the campaign.
   

• Hypermobility and Fibromyalgia List.  Volunteers from the mailing list collected names and addresses of doctors for the mailing list.

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What can I do to help?

The 2002 campaign involved mailing information about EDS to over 1500 doctors worldwide.   The goals of the Awareness Campaign are:

• Educating doctors about EDS

• Media exposure

• Educating teachers about EDS

• Promoting EDS websites to related websites

• Donations

Volunteers are needed in all of these areas.  Please email Email if you want to help.  We have set up a discussion email list for planning the campaign.  All volunteers are encouraged to join the list by visiting http://groups.yahoo.com/group/edsaware/ or by sending an email to: edsaware-subscribe@yahoogroups.com to subscribe.

Educating Doctors

Print and distribute EDS Awareness kits to the doctors in your area.  Kits include the following:

• What is EDS?

• Types of EDS

• CEDA EDS Learning CD-Rom Order Form

Media Exposure

Volunteers are needed to work with their local media to get exposure for EDS.  Options include, but are not limited to:

• Getting local TV, radio, and newspapers to do stories on individuals with EDS.

• Getting EDS covered as a topic in a TV news story.

• Organizing awareness events and getting media exposure.

• Forward the Press Release to your local media.

Several articles were printed for the 2002 campaign.  Click the links below to read the articles.

Volunteer Judy Sobel contacted Ivanhoe Broadcast News and got the ball rolling for the two interviews below.

• Living with EDS -- Patient's Q&A, Reported February 1, 2002.  "In this patient Q&A session, Judy Sobel shares her personal experiences with Ehlers-Danlos Syndrome."

• Ehlers-Danlos Syndrome -- Expert's Q&A, Reported February 1, 2002.  "In this experts’ Q&A session, Jill Douglas-Hand, R.N., and Linda Neumann-Potash, R.N., help explain the mystery behind the overlooked Ehlers-Danlos Syndrome."

Jennifer Cameron shared her struggle with the Canadian school system to obtain school accommodations for her sons in the following two stories.

• Cameron family strives to keep sons in school: Boys with Ehlers-Danlos Syndrome need trained nurse at school to assist them.  Reported February 8, 2002.

• A follow up the the above article, "Mom Breaths Sign of Relief as Boys Get More Care" was printed on April 6, 2002.

Letter to the Editor regarding "Stealthy Syndrome" article.  Printed February 19, 2002.

In the Diamond Rough: 11-year-old uses baseball to fight condition.  Milwaukee Journal Sentinel, posted May 4, 2002.  Story of Jack Jorgenson dealing with EDS.

Darlene Clarke was featured on her local TV news in the story: Rare Disorder Causes Limbs to Fall Apart.  This story was posted March 8, 2002.

Angie Kirk did interviews with the Mount Vernon Register News and WSIL Channel 13 News.  The TV report did a close-up on the EDS Awareness Pin.

• Mount Vernon Register News.  "Girl Diagnosed with Rare Disease" published May 14, 2002 by Mary Kaye Davis.

• WSIL Channel 13 News Transcript.

Educating Teachers

Volunteers with are needed to write brochures and flyers with information for teachers about EDS.  People with medical or education backgrounds are needed as well as parents.  Once the flyers are created, they can be distributed to local schools.

Laura Hague is working on an illustrated manual about EDS for teachers which should be released in time for the 2003 awareness campaign.

We have set up a discussion email list for planning the campaign.  All volunteers are encouraged to join the list by visiting http://groups.yahoo.com/group/edsaware/ or by sending an email to: edsaware-subscribe@yahoogroups.com to subscribe.

Promoting EDS Websites

Volunteers are needed to search for medical websites and submit links to the various EDS group websites for links.  You can also add a link to this website and the campaign button below.

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How can I donate to the campaign?

You can donate online using the button below.  You may also send a check or money order payable to EDS Today to the following address:

 

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