Sunday, May 2, 2010

May is Ehlers-Danlos Awareness Month


Hi, everybody!

Happy Ehlers-Danlos Awarenss Month!!!

For those of you who don't have EDS, but want to donate to the cause anyway, there are links to donation forms. If you would be interested in helping my specific case and assisting me in paying for treatments, etc., there is a donate button on the homepage of the blog. You may make a secure donation via paypal or credit card. Any help you can provide would be greatly appreciated! I love you all so very much. Much joy and light to you! xo

For all of my EDS friends...I hope your May is starting off beautifully! If you don't already know, May is a great month to promote EDS awareness. Many ESDers across the world will be doing a variety of things to raise hope, funds, and enlightenment all in the name of Ehlers-Danlos Syndrome. What will you be doing to help?

Since I am pretty much laid-up, in pain and holed in my house with this foot injury, I don't have the time or body-function to do a fundraising gig at the moment (though I am planning something for later in the year). Instead, my goal has been to get the state of Nevada to actually pass a proclamation making it the 'official' EDS Awareness Month in NV. This would be a great opportunity to get the word out, possibly get press, and make it recognized here in the Silver State. This is on its way! The Governor's office has confirmed everything, and they are in the process of finalizing signatures and making it valid. I am supposed to be getting the authenticated document in the mail in the next couple of weeks, and I will post it up here when I do. From there, my goal will be to get local media outlets to cover the exciting announcement! Other things I will be doing to help this month include the usual blogging, spreading info on my social media pages (like Facebook), and spreading the word via email and such.

But...there are a TON of other things any one of you can do! I have included plenty of links to make it easier. Please find something - even if it is just calling a few friends and family members that don't know about EDS and telling them about it. Or bringing flyers to your doctor's office. Or even holding a bake sale or getting the kids to host a lemonade stand in the driveway to raise funds you can donate to EDS research (hopefully the non-animal testing kind!). It is YOUR month - get involved! :) Help raise awareness, bring about new treatments, and maybe even find some sort of a cure for this not-as-rare-as-most-people-think 'invisible' disease!

Click the links below to find info on EDS and how to help!

Ehlers-Danlos Network
  • Donate to Ehlers-Danlos Network Cares
  • EDS posters to pass around at schools, doctors' offices, etc.
  • Templates for letters to friends, docs, newspapers, etc.
  • Store to purchase EDS swag and promote awareness

EDNF (Ehlers-Danlos National Foundation)
  • Donate to EDNF
  • EDNF store to purchase swag, info on EDS, and emergency wallet cards, etc.
  • Become a member of EDNF to gain access to the forums

Fundraising Ideas for kids (donate profits to local families who are affected by EDS, or to a non-profit like EDS Network for research)

Find your local newspapers here, if you are interested in submitting an article, informing them about EDS, etc.

If you have any other ideas, feel free to post them in the comments section! I know a bunch of you EDSers have already told me about your great ideas and events you have planned - let's all share!

Good luck spreading the word on EDS and let's kick this 'invisible disease' into the mainstream! :)

xoxo
dani

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