Thursday, September 2, 2010

Perez Hilton Blogs About EDS!

A couple of months ago, I wrote an email to Perez Hilton, the celebrity blogging gossip queen. I was hoping to convince him to do a post on EDS, since his readership has been reported around 280 million a month, with 13.5 million being unique readers. I figured this would be an amazing way to spread the word. Perez also has a soft spot for animal rights, so I knew we had a few things in common to start a conversation. I never heard back from him or his helpers, so I figured he wasn't interested. I don't know if someone else convinced him, or if I had a hand in this, but either way...we just got an EDS blog post on a site with almost 300 million readers!! Oh my goodness! This is fabulous news for EDS awareness! I hope this helps shed more light on our genetic illness and also helps us raise money for our EDS treatments. I raise my cup of tea to Perez!

xo
dani

The following post appeared on Perez Hilton's Blog:



"CLICK HERE to read up on and donate to a very worthwhile cause!"

"Thank you to our EDS Network CARES families & our EDS families from Canada which are also part of EDS Network CARES foundation.

We are finally able to get some positive and hopeful EDS research going. The last time EDS research was done, was back in 2004-2005. That's not good enough. This research needs to continue throughout the years to come. Research is an on going project and if we want to see progress continue for Ehlers-Danlos Syndrome we need to continue to support research by doing the same as we have been doing! Raising Money and doing Fundraisers!

Without your donations we wouldn't have this first time EDS hope. This has been a long time coming for all our EDS Families."

9 comments:

Chantel said...

So exciting! That's amazing outreach right there! XOXO

Flexability is over rated, creativity is ingenious said...

Hello my bendy friend,
I'm surprised we didn't meet at the conference, although we might have but the whole thing was a whirl-wind. Glad to see another bendy who's doing things similarly to me. Take care and just keep swimming,swimming,swimming.

:Nicole*

Anonymous said...

Congrats - that is awesome news.
ED research is ongoing though, and is being published all the time! The last paper published on it was last month! Check out www.pubmed.com and search for EDS and you can find the recent research on this disease.
Keep up the good work.
- An ED researcher

ashpauls said...

wow that's wikid!

Viviana said...

wiiiiiiiiiiii!!!! i got so exited i started clapping away and ouch! lol Im putting up more videos on youtube and i talked to some celebrities in Puerto Rico!! These are the reasons why we have this syndrome..to help, spread the word and make a change!! Altho i wish it didnt hurt so much :) Soon im making a video journal with some friends who r indie movie producers, and hopefully i can do something with it. So im starting good things. Dont have a blog yet, its sooo hard to type :) I will have an interview in a few months in a Puerto Rican news channel too. But Im still in Maryland so I have to wait until I get back home.

thanx sooooo much! u r my inspiration girl!

Anonymous said...

Good news, looks like the recall on midodrine might be put on hold!

Appleshoe said...

Hello, so glad to have found your Blog. I've had almost 24 years with EDS; I was diagnosed in 1986. I thought you would be interested in knowing of possible research on EDS going on at the Mayo Clinic in Minnesota. I was informed by my Mum but have not researched into this yet. Take care.

creative chaos said...

Way to go girl! Keep on with your mission. Hopefully we can get some awareness, and research!

www.orense-3d.com said...

Oh my god, there is really much useful information here!