Tuesday, February 28, 2012

Rare Disease Day pt: 4

Even after everything I have said about it, maybe some of you are still wondering, "What is so special about Rare Disease Day?" Well, I'll tell you what is so special about it.

This day is for some of the most special, rarest people out there and it takes place on the rarest day of the year. Rare Disease Day happens on leap year, February 29th. See, we're not so silly and we can do things that are meaningful. Get it, we have rare diseases and we hold our awareness campaign on a rare day?

Kidding aside, let's get down to more serious business guys. Well, maybe it's not going to be so serious.

Night before last I had a strange dream, as is common for me. The thing is, during this dream I was trying to explain what Wegener's Granulomatosis is to Dom De Luise. I'm not sure why.

Dead actors aside, I awoke the next morning with a mission. I sent out messages to EVERY representative from my state. All of them. The only ones I left out were the ones that wouldn't let me send them messages. This is what I sent:

Are you aware that Wednesday, February 29th is Rare Disease Day? I am. I suffer from a rare autoimmune disease called Wegener's Granulomatosis wherin my immune system attacks the blood vessels throughout my body. It effects less than 1 in 200,000 people and is considered a rare disease. There is no cure and no disease specific medications for patients to use. Very little research is being done for this disease.

Rare Disease Day is an international event started by EURORDIS and has become an annual event. The goal of this day is to help raise awareness.

Can you help me raise awareness and, hopefully, research for my disease and many others by showing your support of those that live with a rare disease?

I finished the message by thanking them and giving them the link to my blog.

Well, today I got two responses back! One from the Governor Herbert and another from Senator Lee. They weren't automated responses either! It pleases me to think that I might be doing something to help others get the help they need and to know I am doing my part for Rare Disease Day!

You can do your part too, you don't need to donate money. Check the link rare disease day to see what you can do to help!

Edit: just found this- you can sign up from anywhere to help send a message to President Obama and Congress http://rarediseaseday.us/take-action-now/handprints-on-the-hill/  Let them know that this is important to you!