Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable
connective tissue disorders. It is a progressively debilitating
syndrome that can cause loose unstable joints which dislocate easily,
skin fragility (tears and bruises easily), and/or organ fragility
(major organs, veins and arteries can spontaneously rupture). EDS
affects about 1 in every 5000 people; however it is grossly under-
and/or mis-diagnosed: some 80% of people with EDS do not receive a
proper diagnosis or treatment within their lifetime. We are working
to change this statistic by raising awareness of this disorder within
the medical community and in society at large. The Ehlers-Danlos
National Foundation (EDNF) is a 501(c)(3) nonprofit organization.


My Dearest and Most Treasured Friends – I am Sincerely Pleading for
Your Help:


May is Ehlers-Danlos Syndrome (EDS) Awareness Month


Please, PLEASE, please help me spread the word. I cannot stress to
you how important this is to me. (This is your opportunity to have a
direct affect on the quality of life for at least 50,000 known people
in this country alone, and countless unknown.)


I, Margaret Foote, am personally composing this email for my friends
so that all of you can have a better understanding of my disability
and how we with EDS are impacted every moment of our lives and can
benefit from your help.


An EDS General Awareness and Patient Brochure is available for
download here: http://www.ednf.org/dmdocuments/eds-brochure-high-
res.pdf

Please use it and this Sports Poster flier:
http://www.ednf.org/abouteds/images/stories/SportsPoster_%5BRGB_web%
5D.pdf to inform yourself, all of your doctors, your children's
schools. and your local gym and community centers about EDS and how
it is diagnosed. (For every facility, doctor, school nurse, school
gym teacher, local gym, community center, etc. that you give these
materials to, please email me their location and contact information
so that I can inform EDSers about these newly EDS-aware resources in
their area.) And, please feel free to contact me directly for more
information about EDS and/or the EDNF and the Local Group program for
which I serve as a Regional Coordinator and actively volunteer with
groups in DC/MD & VA.

Print out and distribute these brochures and fliers to whomever you
meet. The only thing "rare" about my disorder is the amount of
people who are properly diagnosed within their lifetime – awareness
can help change this.

For more awareness activities, fundraising ideas, and additional
printable materials go to: http://www.ednf.org/abouteds/index.php?
option=com_content&task=blogsection&id=12&Itemid=74
And, here: http://www.ednf.org/abouteds/index.php?
option=com_content&task=view&id=811&Itemid=74
And, here: http://www.ednf.org/abouteds/index.php?
option=com_content&task=view&id=17&Itemid=90


I deeply appreciate all of you helping me spread the word so that
people who have needlessly suffered will finally have the recognition
and assistance that they so desperately need. Please help make it a
Happier EDS Awareness Month this year for everyone! (Forward this
email to everyone you can.)

Most sincerely and appreciatively,
Mags

For more information about my latest personal projects, check out:
www.yomags.com and www.YouTube.com/yomags and www.MySpace.com/yomags

My personal EDNF fundraisers are at: http://firstgiving.com/yomags or
http://www.firstgiving.com/EDNF-NoVA


Additional ways to help:

Don't Forget Mother's Day on May 13th

When you order flowers at http://ednf.flowerpetal.com 12% of each
purchase goes to EDNF. That's $6 for a $50 purchase and $12 for $100.
There are no additional fees for delivery, even same day delivery!
You can save up to $10.95 compared to other on-line florists. Tell
everyone about http://ednf.flowerpetal.com and order throughout the
year.

Shop online?

Shop at most of your favorite stores (Lands' End, Office Depot,
PETsMART, Gap, Best Buy, JCPenney, Shop NBC, Neiman Marcus, Expedia,
Barnes & Noble, Vitamin Shoppe, QVC, Dell, Hallmark, Staples,
Drugstore.com, Orvis and eBay to mention just a few) but do it thru
iGive.com and money will be donated directly to the EDNF. If you join
iGive.com and make a purchase within 45 days from one of 688 or so
participating stores, iGive.com will donate $5 FREE to your favorite
worthy cause! Join to Support Ehlers-Danlos National Foundation; it's
FREE, private, & easy: http://www.iGive.com/html/refer.cfm?
memberid=424670&causeid=6188. Up to 26% of EACH purchase gets
donated! MORE INCENTIVES: 1ST TIME BUYER DEALS worth hundreds of
dollars, EXCELLENT PRICES and exclusive deals for members, FREE
SHIPPING offers from great stores.

Google a lot?

Do your searches through GoodSearch.com (powered by Yahoo!) for a
change and earn some change for the EDNF with every search. Go to
www.GoodSearch.com and choose the: Ehlers-Danlos National Foundation –
EDNF (Los Angeles, CA). They even have a downloadable toolbar.

Like coffee?

http://www.javajoesroasting.com/mastersh.nsf/WBH?
OpenForm&Cat=CoffeeClub&Type=ednf&RA=ednf


For more information about EDS check out: www.ednf.org

EDNF Announces New Medical Resource Guide – a major revision with
updated information. It guides the Health Care Professional through
an introduction to EDS and the EDNF website. This is the latest step
in creating resources for those affected by Ehlers-Danlos Syndrome.
The EDMRG will be available May 15 at http://shop.ednf.org. Medical
Resource Guides for medical specialties, Dentistry (June) and
Ophthalmology (later this year) and more are planned for the years
ahead.

Local Groups Create May Awareness Excitement –
• Local Group of Greater San Diego - Taxi Tops – Yellow Cab of San
Diego is donating ten Taxi Tops Ads from April 18 through the month
of May. In addition to the general awareness this provides, it will
be especially noticed when doctors throughout the nation will be
attending the American College of Physicians Internal Medicine
Conference 2007.
• EDS Advocates of Northern California – EDS Advocates of Northern
California is participating in the local Marin County Human Race as
part of their May Awareness campaign to raise funds for EDNF! They
will have a booth with EDS material to hand out, while also
participating as fundraising teams to raise as much money as possible
for EDNF.
• Western New York Branch of EDNF Adds Posters to the Mix - The group
has developed a new poster for ERs and will be placing these in
hospital ERs, and the Sports and Coaches Poster in schools throughout
their area.