Hey…Josh Wilson…

Some of you may not know the story behind “I Refuse” and how exactly the idea came about, so here it goes…

One night I was working when I noticed a Facebook pop up.  At the time, I was heavily involved in some things with regard to Tripp Roth and so it was not unusual for me to get messages that late.  Upon opening it, it was obvious that it was one of “those” messages.  It was not the first and I knew it would not be the last.  It was ugly and really nothing wort repeating.  However, it brought me to a breaking point, enough to post a status about it:

“Over the last several months, I have received messages and comments from people, many whom are friends. Some of them have been very positive and others, well, others have been let’s say misguided. People have asked why I would get so involved in something that really does not impact me. I am not quite sure how to respond…I guess I it is the way I was created…I am not the type of person that can just walk away when I have the ability to do something. The reality is, I am impacted each and every time I see a picture or a video, I am moved in ways that some people may not be able to understand. ”

Within a few minutes, this was posted: “There is a song by Josh Wilson called “I Refuse”. I thought of it as I read your post. You have a beautiful soul!”

Of course I went to YouTube to look for it.  Well, needless to say, I was totally and completely moved.  So for next couple of hours, I put together a video and posted it…within days, I Refuse was born.

So, here we are 6 months later and what I thought would be a small little “event” to spread awareness has become more amazing that I could have ever imagined…

I owe it all to a song and some precious souls who fight every single day despite their pain.   So, Josh Wilson, thank you.  The families and sufferers of Epidermolysis Bullosa, thank you.  My love and prayers are with you always…I know that God has called me to do this and I am honored.  I will continue to do this work until there is no need to do it anymore.

I would love Josh to hear from all of us.  Please send him a tweet @joshwilson and let him know that YOU REFUSE!

An explosion of awareness!!

Last week was the start of something amazing…

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People began posting pictures and that is when it happened…my Facebook and email exploded!  I had message after message requesting a shirt and people waiting to be a part of this movement.  As I quickly responded to every message, I knew that this was only the beginning and that there was so much more that could be done.  I knew that in that moment, I was given an opportunity and there was no way that I was going to let it pass me by.  So, here it is folks…let’s not stop here…let’s make this a movement…let us be a force in this fight.

I have made arrangements to have more items produced and I have updated the link and ordering is now open again.  Please take a moment to share this link with your friends and encourage them to be the change, to be part of the cure.  Together, we can make a difference, awareness is the key to put an end to EB!  www.irefuse2012.eventbrite.com

I refuse…will you?

Epidermolysis Bullosa causes children and adults to suffer each and every day. EB has forced them to go to battle and fight to survive. The slightest amount of friction, even the softest of touches can cause severe and excruciatingly painful blisters.  There is no cure.  Many do not make it to their first birthday and if they do survive, there days are spent bandaged from head to toe, full of constant pain and suffering the many complications that come with EB.

I am dedicated to raising awareness and being a voice for these children because I refuse. I refuse to wait for someone else to do something that I myself can do. I cannot stand to watch another person suffer when I have the ability to help make a change. I refuse…will you?  This year I ask each of you to refuse to wait for the change and instead be a part of the change.  Will you be a voice, a voice for all of those who cannot speak?

I am so excited for the possibilities that this campaign will bring and I hope that this is only the beginning of something incredible.  With your help, we can create change, we can bring hope, we can fight for a cure!  Together we can all be a part of the cure and end EB!