EB Awareness Week: John Hudson

EB Awareness Week- An EB Advocate

The dictionary defines the term Advocate as:

ad·vo·cate

   [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] Show IPA verb, ad·vo·cat·ed, ad·vo·cat·ing, noun

verb (used with object)

1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

noun

2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.

3. a person who pleads for or in behalf of another; intercessor.

4. a person who pleads the cause of another in a court of law.

An EB Advocate would be someone who support a someone with EB or advocates for EB awareness (among other things).  There are many EB advocates within the EB community; many wonderful people who have NO personal connections to EB but felt drawn to the cause and have taken it on full force! 
 

One person I want to tell you about today is my friend Christie Zink.  Christie first leaned of EB a little over a year ago when she came upon the blog of Tripp Roth.   Since then she has make EB Awareness her main cause!  On her blog, This Little Light, she tells the stories of those with EB.  She is the founded of  'I Refuse' a movement to get others involved in EB.  Check out the EB Shop and get your EB Awareness merchandise before its gone!  It has taken off like wildfire!!!  She has also been nominated for 'Yahoo's Women of Shine!  Please go vote for Christie!!!   The grand prize is $10,000 and if she wins she will donate the money to EB research!!  So please go vote!  Voting ends on Tuesday (10/30)

So GO VOTE!!!

Christie is just one of the MANY EB Advocates out there!  I wish I had time to post about them all but it would take WAY longer than a week!  So to all the EB Adovcates out there, THANK YOU for all that you do for those with EB!!

  

EB Awareness Week: EB Book

This book was published in 2009 and I had no idea it was available on-line, until tonight!  

It is VERY long and very technically but has A LOT of great info on EB; all types and all complications and everything associated with each type!

Check it out!

Life With EB

EB Awareness Week: The History

Per the DebRA web site: "National Epidermolysis Bullosa (EB) Awareness Week, is a time to increase awareness of EB, to promote the need for a cure and to spur advocacy on behalf of families suffering with the emotional, financial and physical burden of the disease."



EB Awareness Week was first established in 1984 by President Ronald Reagan!  You can read the Proclamation here.  It was later decided to hold EB Awareness Week the last week of October each year.

There is no right or wrong thing to do during this week.  So people plans HUGE events within their community.  Some pass around info at work, school or within their community about EB.  Some (like me) post various blogs to educate and promote awareness about EB.  It doesn't matter what you do, just do something! 

EB Awareness Week

October 25-31, 2012 is National Epidermolysis 

Bullosa Awareness Week!

My hope is to do a blog post each day about something EB related!  I have many ideas; just hoping I can find the time!