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.
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!).
- 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.
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!