Tuesday, September 21, 2010

Happy International Day of Peace!

Happy international day of peace!! Go small, big or both! Practice some random acts of kindness today! Small ideas: pay for the person-behind-you's coffee, help someone put groceries in their car, buy a potted plant for a stranger, give a homeless person a meal or even a bag of groceries. Pay it forward: it will create a beautiful chain of events. :) Spread love and peace today and always. :) I love you all!!

U.N. International Day of Peace Information

xo dani

Thursday, September 9, 2010

FDA Reconsiders Pulling Midodrine (ProAmatine)!!

Woohoo! This is wonderful news for POTSies!  The FDA is reconsidering the midodrine recall, and we now need the drug company to follow suit, since they were planning on pulling the drug anyway. I would like to thank Lauren from Where Did I Get This Lemon? for her post on Midodrine (ProAmatine):

"According to The New York Times, the FDA has reconsidered its decision to remove midodrine (ProAmatine) from the market due to the many complaints received by POTS patients like us that find it necessary for everyday living. The FDA has backtracked from it's original decision, and will now allow midodrine to continue to be sold.(YAY!) Finally, the chronically ill are listened to by a government agency…that must be some kind of record! Good news all around.

Please see the link below for the full article from The New York Times.

F.D.A. Backtracks and Returns Drug to Market"


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!


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."