Sunday, May 1, 2011

May EDS Awareness Month: How to Help!

My darling friends and family, Happy Ehlers-Danlos Awarenss Month! This post is dedicated to ways we can all help those with EDS by doing things like raising awareness and helping with funding.

Yesterday's exciting post about Nevada's 2011 Proclamation included info on how to work on getting a Proclamation passed in your state. The first step would be to find out if there is already a Proclamation in your state. You can leave me a comment below with your state and I will let you know. If you have other stuff to discuss, please leave it in a separate comment, it will make it easier for others to see. Then, follow the simple steps outlined yesterday.

There are also some really great posters that were designed and made for EDSNC. They are copyrighted, but we can copy and print them in order to pass them out and spread awareness. The best way to do this would be to get the image from here, download it (save it to your computer) and make copies. You could make letter-sized copies or even poster-sized glossy copies. If you need hi-res images, you may need to ask EDSNC how to get them. You also may need to "like" them on their Facebook page in order to view the images. Take the images to Kinko's to make bulk copies. And, color copies always make a bigger impact than black-and-white.

Property of EDSNC

Property of EDSNC

 Property of EDSNC 

 Property of EDSNC

Where can you leave the copies/posters/flyers? (Bring a copy of your state's Proc with you, if you have one!)
  • Ask your doctors' offices or hospitals if they would be willing to post them in the doc's rooms or the lobbies. Explain to them why this would help.
  • Go to other doctor's offices around your town, even if you aren't a patient, and talk about it with them. Maybe you can even leave copies of the flyers (the general one) in their lobby. 
  • Check with Physical Therapy offices.
  • Your local coffeeshops, delis and grocery stores often have bulletin boards, try there.
  • Talk to friends and family about spreading them around.
  • Some places of employment will allow them to be posted or passed around breakrooms.
  • Pediatrician's offices would be a great place.
  • Try local schools, daycares, preschools, etc.
  • Anywhere else! Just be sure to get permission before posting something.
Find your local newspapers here, if you are interested in submitting an article, informing them about EDS, etc. Or try contacting your local TV stations to run a story on EDS.

Social media is a great way to get the word out about Ehlers-Danlos Syndrome, so feel free to blog about EDS, write a note and tag your friends on Facebook, or even tweet about donating to EDSNC or ENDF. I know personally, everyone on my Facebook page has heard of EDS from me, and they are probably sick of hearing about it. I am going to take the other approaches this year. But, if you haven't spread the word via a social networking site, think about posting one quick message a day about EDS, one for every day of the month. Find a great list of 31 Facts about EDS here. ("Like" them to view it. They are great tidbits!) If you don't have a Facebook account, you could always just write a heartfelt email to your friends and family telling them about EDS, what troubles you face, what troubles others face, and asking them to support research by making a small donation.

Get creative! Feel free to comment below if you have other ideas to share. A lot of people read this site, and there might be something I haven't thought of! You could even be as goofy as me and write all over your car. I hope at least one person wonders about what I wrote and looks it up online! ;)

The other part to EDS Awareness Month is fundraising. There are a few research projects going on right now, and you could ask for donations, hold a bake sale, or have the kids manage a lemonade stand one warm weekend to help raise funds. Any dollar raised could help save the life of you or someone you love.

Any money donated to EDS Network C.A.R.E.S. will be used for one of the two research projects going on right now. Literally, every dollar will make a difference. It can be hard to find the right words to ask people for money, so they have a great template/letter to help you out with this. You could even just email it around to your family, friends or coworkers (shh, don't tell your boss I said that!).

Ehlers-Danlos Network C.A.R.E.S (EDSNC)
  • Donate to Ehlers-Danlos Network Cares
  • Templates to ask for donations.
  • Store to purchase EDS swag and promote awareness.
  • Info is currently on the homepage about the second (and newest) research project, and there is info about all current research here.

The Ehlers-Danlos National Foundation currently holds conferences once a year where EDSers are able to meet others like them and attend group lectures on all sorts of EDS topics. I went to the 2010 Conference in Baltimore and it made a big impact on me. Getting to meet one of my EDS friends in person was such a relief, a treat, and an inspiration, and learning about treatment options I had never heard of was also very helpful. EDNF also provides a host of information on their website about EDS and newsworthy items.

EDNF (Ehlers-Danlos National Foundation)
  • Donate to EDNF
  • EDNF store to purchase emergency wallet cards.

It is YOUR month - get involved! :) Help raise awareness, bring about new treatments, raise some money and maybe help find some sort of a cure for this not-as-rare-as-most-people-think "invisible" disease! Good luck! Let me know how it goes for you!



Kocak's Do Europe said...

Hey Danielle,
Just wondering if you knew of any links to help EDS in Canada?
I have EDS. MY husband desperatly wantes to organize fundraising to help everyone. (we have children being tested in June) Even our doctors can't seem to find any groups for EDSers? Just wondering?
I follow your blog, I hope that you are feeling better than you were.

Dallas Banks said...

Does Virginia have any proclamation in effect for Ehlers-Danlos syndrome?

Vegan Danielle Davis said...

@dallas - i just checked and, to my knowledge, there isn't a proclamation for virginia. if you want to help, follow the instructions i listed, and check with the eds network cares site - this will be the best way to get started. good luck and let me know if you need any help! :)

Dallas Banks said...

So, I got Virginia to pass the proclamation, but since it is the first time the state is recognizing EDS Awareness, they are only doing it for one day. Kinda like a test drive. Anyways, what do you recommend for me to do now? What should I do for a press release? They don't teach 17 year olds these kind of things.

Vegan Danielle Davis said...

@dallas - AWESOME!! :D so proud of you and so happy! i lived in virginia, so that is even more special to me! yay! okay, is rather tough to get media to run stories on proclamations, so don't get down if you don't end up getting any press. just go into it with an open mind and give it your best. the first thing to do is write down a list of all of your local media outlets (i would try all newspapers and tv stations). next, call each of them and ask for the person (or email) that you should talk to regarding "news releases". your goal is to get their email address. you are going to write a "press release" about EDS Day in VA and email it to them. as for the news release, there is a format that should be followed: -- basically, you want to write the who, what, where, when and why. i can help you with this, or you can try to do it on your own. :) if you would like help, just email me (the link is on the homepage of the blog), and i can rework the one i wrote for Nevada. this is time-sensitive, so we have to get on it quickly. i am on vacation, so i will respond as quickly as i am able, but it may take a little longer, so you are free to just jump in. :) good luck, and again - GREAT JOB!!!!! :D

Vegan Danielle Davis said...

@dallas - don't forget - when you get the hard copy in the mail, take a photo and put it on the EDS Network Cares Facebook Page! :D

stretchylesley said...

Does Oregon have a Proclamation in effect?

Appleshoe said...

Somehow I missed the first picture before. I also painted my car like this for May. Made me smile to see your picture today. Take care.

Vegan Danielle Davis said...

@stretchylesley: oregon doesn't have a proclamation yet, but unfortunately won't this year either. they are the other state i tried for, but they denied it this year. i do have a good contact for next year though, and hope that we will get OR to come through for us in 2012! :) oregon is one of my favorite states - it is so beautiful and i love the people there! :)

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