Wednesday, 23 January 2013

An Urgent Appeal to anyone with a heart!!!

we petition the Obama administration to:

`Free wound care supplies for all Epidermolysis Bullosa - EB patients in the United States.

Epidermolysis Bullosa or Eb is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds. The risk of infection is so great that most severe cases have to completely bandage from neck to toe. The worst forms of EB lead to eventual disfigurement, disability and often early death.
The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen lasting up to 4 hours in more severe patients. As part of your "Obamacare" Bill, it was stated "One of the main goals of ObamaCare is to ensure that all preventative care will be free on all insurance plans. These bandages we are requesting for free are exactly that, Preventative care.

Please sign, share and HELP make this happen..... This would be HUGE for our families

I will be writing in support of this petition, for anyone who wishes to also do so:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Be sure to write the link to THIS petition on it.....

Much love!!

Sunday, 6 January 2013

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 :)

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...

Much love to each of you!!