Friday, 16 August 2013

EB Camp UK Fundraiser

With the Launch of the foundation thebutterflynetworkhere2help my main passion has become getting our EB Camp in the United Kingdom firmly in motion. The company I have chosen are excited and eager to help with all the finer details to ensure this is a Camp to remember.

Due to my work load and family holiday, I will be viewing the sites in person late September. This is where I need the help from you, the supporters.

I have set up an online fundraiser so everyone can clearly see what monies have been raised and why they are being asked for. Go to link:
You can still donate via the website, and please remember every single penny counts! Nothing is too small and its all appreciated, not just from myself but from the Teenagers & families I will be taking to Camp.

I feel very strongly that having this opportunity is so important for both Eb Teen and for the families too. Giving them chance to meet others and share experiences. Whatever the Eb type, Im sure strong friendships will be built from this adventure.

The funds raised will pay for all activities, accommodation and meals along with some parent/sibling activities if possible. These children spend most of their lives wrapped in bandages and unable to join in with peers at school for fear of damage caused to their skin. I want this to be a memory they will never forget..

Please share, talk to friends & family about this... Together we really can make a huge difference!

Tuesday, 6 August 2013

Launch of The Butterfly Network Here2Help

Well its been a long time coming but we are finally here!! Still a few things to put in place and we are waiting on our number but dont see why we cant get a head start :)
  Our new Logo kindly donated by waynelemosdesign

 Let me show you around our new website:

You may notice especially if your viewing via a Pc or Laptop that we have pages and then sub pages... This allows us to give a better variety of information.

So under Welcome we also have Meet Us and Donate To Help and so on...

Let me explain a little about what and who we are...

As a team we want to welcome each and every one of you to The Butterfly Network Here 2 Help. Its been over a year in the making & planning. We can't put into words how it feels to have finally made our launch and to be helping in what we feel are the right places.

The Butterfly Network Here 2 Help, is a sister organization to The Official Butterfly Network which is founded by an amazing friend Kristina Wyatt. We are an unregistered foundation at present, waiting on our HMRC number to enable us to legally fund raise and move forward in assisting people and families around the world with Epidermolysis Bullosa. In time we want to claim full charity status but until that time, it's business as usual. Help us to help others!

We are a small team at present and we specialize in offering small donations IE: petrol to attend Eb clinics & cheer-up gifts for people in the Eb community. We are creating a Teens Eb Club, where we will have fabulous weekend breaks around the country (An example ~ London's West End with overnight stay at a hotel & show or museum) for member plus one carer. Our our biggest plan is to host the United Kingdom's very first Annual EB Camp, which we aim to hold September 2014, location & date TBA. Watch this space for updates and applications for Counselors.

The bigger charities ultimately focus on research for treatment and a cure for this "Worst condition you never heard of" which is desperately needed. But we felt compelled to do something for the here and now! And instead of just asking for donations or people to hold fund raisers in aid of us, we started selling Homemade Cards a while ago to raise funds.
These stunning cards will continue to be available via our Facebook page and the blog Some amazing gifts will also be added along with the cards very soon.

We manage an online forum Epidermolysis Bullosa Lounge which is worldwide and now home to over 1200 members from around the world. The Lounge is a place where people come together for advice, support and to just be a part of an amazing community. We have a large number of supporters that are with us to assist where possible.
On top of this new venture, we also have our full time jobs & families etc. So please bare with us for responses to emails.

Fundraising with GoGetFunding

Please feel free to contact us at anytime, share our website and donate or purchase our cards to help others in need.
Have a wonderful day and look forward to sharing this amazing journey with you all

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!