Been a while...

 Happy New Year to everyone

 and i hope you all had a wonderful festive holiday.

A wonderful lady has created a channel and uploads new video's often, why not subscribe? You wont be disappointed...
"Electric Butterfly" 

I have struggled to create a new post so didnt bother with any ramblings that were of no interest. BUT since i have encountered so many problems regarding our EB Lounge, the policies of Facebook and the fact I, amongst others have been issued a 30 day ban from friend requesting, had photo's banned and been chastised for simply creating awareness for EB, i now believe its time to look forward.

I have a vision for our very own "Facebook"..... One where you can post whatever you like, talk about private things without sharing it to the world, locate a ton of EB information under one roof and have somewhere safe & secure for your whole family. Its all i wanted when i created the EB Lounge but after a very testing 2012 its just not stayed that way...

Yes, people keep saying its been done, it failed and what-not but i am a positive person. I see bright things when others see pitch black. Its happening as i type this, a wonderful team has been put together to make 2013 a HUGE year for our families. I am hoping you will stick with us and trust us as you have all this time.....

My love for the EB community doesnt stop when i log off the computer, even at work my mind is racing with idea's for a safer environment, thoughts going around the world for sick children or parents that are struggling to pay bills because of wounds so bad they cant work........

Please sign this petition in which i have created to TRY and get some movement for our American families who are forced to pay out HUGE amounts towards medical bills for life saving bandages, creams etc..
Together we make a much louder noise!! Sign, share & encourage others to do the same...
Many thanks :)

https://petitions.whitehouse.gov/petition/free-wound-care-supplies-all-epidermolysis-bullosa-eb-patients-united-states/MwPrNz1w

I see a bigger picture.......

 With thanks to Kristina Wyatt for the stunning art work

As posted By Eb Resource:

What is your family's EB story?
If you've thought about sharing it to educate others, consider starting a blog...
http://eb-resource.com/2012/04/24/blogging-inspiration-education/

Much love to each of you!!