Sunday, 4 August 2013

Hope in the community!!

I cried the day this picture was sent to me cos i couldnt change a thing or make it go away... 

Today i cried so hard when i read THIS:

"He did it....Dr. Tolar did it. In the lab, they were able to use Charlie's own cells and "CORRECT" the dysfunctional gene which causes Epidermolysis Bullosa. Charlie's own cells are now producing col7 on their own (in the lab). Now, to give him back his OWN "corrected' cell back."

Charlie's Legacy......

In Charlie Knuth’s case, Big Data helped unlock the genetic code so that researchers could use molecular scissors to precisely cut out a single letter in his faulty genome and replace it with the correct one. Mark J. Osborn, an assistant professor at the U’s Pediatric Blood and Marrow Transplant Center, was the lead author in a recent peer-reviewed article in the journal Molecular Therapy describing the procedure.

The result: For the first time, Charlie’s skin cells began producing the “Type VII collagen” fibers that act like Velcro to anchor the skin in place.

Is this really the cure we have all waited for?! Charlie Knuth, I always knew you was special from the moment i laid eyes on you!

Trisha & Charlie with Dr Tolar

Right after they had just been given this amazing news!!

As posted by Jess Groff ~ Founder of Butterflysandbandages: 

ATTENTION: I want you all to LISTEN UP each and every one of you stop what you are doing and read this NOW! The EB community today is given HOPE! A hope we all dream of each and everyday that goes by. A brake through in medical research that could change the lives of all children, adults and young adults all over the globe who suffer everyday. DR.TOLAR has made leaps and bounds and PUCK (Pioneering Unique Cures For Kids) is funding this research along with others. I am not asking you I am telling you all to get behind us, to make a difference and save the lives of those who suffer from EB. My organization Butterflys AndBandages for months now have been trying to get everyone's support to purchase a bloody ticket for $20.00. THIS IS WHY. We need your support. You are right now witnessing history in the making and you can be a part of this. Our fundraiser for EB is directly funding this. DIRECTLY. Money raised will be donated via I REFUSE and PUCK to help make this dream a reality for families around the globe FINDING A CURE. We are also supporting THE BUTTERFLY FUND (making a difference in the lives of those who suffer from EB) and THE JONNY KENNEDY NORTH EAST CHARITY (providing assistance to families in need). Now there is no excuse not to purchase a ticket there is no excuse not to get in there help us sell them, spread the word, share, scream from the hill tops dam it I don't care. My email is in to DR. TOLAR in the hopes maybe just maybe this could also help Ian. I HAVE HOPE UNDERSTAND ME HOPE. I will not give up hope. For a $20.00 and that's all it cost you yes that's right $20.00you to can be a part of this. Funding is vital to make this dream and reality. I am here everyday pushing and pushing and WHY you ask? because I know hundreds of families around the globe right now who are fighting for the lives of there children including my very own family. I did not embark on my own organization to sit on the side lines and watch. I started my organization and this fundraiser to make a true difference and I tell you what I am off to a roaring start. What you all don't see every day is what goes on behind the scenes. We are providing financial support where we can, we are assisting EB families to hospitals, helping to make life a bit easier, we are providing support to families who share the same struggles as mine. I spend every waking hour of everyday and night pushing and pushing to change something. I am surrounded by amazing people who to share the exact same dreams and hope. I am a fighter just like my Nephew Ian and I will not stop my fight and I will not stop annoying each and everyone of you to get involved. Buy a ticket help sell tickets, donate, spread the word. Do what ever you can do but all I ask is do something. Today when I saw the post made by a women I so greatly admire Trish about this amazing breakthrough I cried like a baby. I truly understand what this means to all EB Families. We have lost to many children, adults and young adults to EB this community has suffered enough. We Fight and We Fight and what for HOPE. TODAY HOPE IS ALIVE AND WELL. All I am asking is you get behind us fight with us lend a hand!

Post a Comment