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My name is Laura and next March I will be taking part in DEBRA Ireland's Arctic Challenge in order to help raise awareness and raise much needed funds for Debra Ireland, a charity that help support families living with the rare and painful skin disease Epidermolysis Bullosa (EB).

The Challenge: To
survive in the extreme cold of the Arctic Circle! Myself and a brave group of volunteers will be travelling 150km north of the Arctic Circle where we will have to survive for one week in the -30˚C conditions completely off-grid  with no electricity or running water. We will
learn the essential skills needed to survive these grueling conditions and we will have to go  on long cross-country ski treks leading up to a an overnight campout in the sub-zero conditions, pulling behind us our 30kg sleds with all the equipment that will be needed. This trip
will be a huge challenge, but it is nothing compared to the challenges faced by EB patients every single day.

How I got involved:  I got involved with DEBRA Ireland as I work
for a company that are developing a gene therapy to cure Recessive Dystrophic Epidermolysis Bullosa. I came across the challenge one  day when I was doing some research and instantly knew I wanted to get involved! Everyday I read about EB and see images of patients and I can tell you it never gets any easier to see and you never get used to used to it. I still have to take a step back every now and again to really appreciate how strong patients living with this condition are. Although I am involved in developing a treatment for RDEB, I know that it will be a long process before it is available for patients so I wanted to do anything I could to make even a small difference to patients currently living with the disease.

Epidermolysis Bullosa: EB is a group of rare genetic skin disorders characterised by extremely fragile skin which easily blisters and forms painful open wounds, the disease is also known as the butterfly disease as patient’s skin is as delicate as a butterflies wing. Approximately 500,000 people are living with EB world-wide, this includes around 300 families in Ireland who are affected by the disease. It is caused by mutations in genes that code for structural proteins that function to hold the layers of the skin together. When these proteins are mutated or absent, the layers of the skin easily separate with the slightest touch cause extensive blistering and extremely painful open wounds, similar to that of 3^rd degree burns. There is currently no cure for this horrific disease. Treatment is palliative and consists of prevention of skin trauma, preventing infection and treating associated complications. Wounds care is a long and excruciatingly painful process that can take up to 5 hours. Surgical intervention may be required to correct hand and foot deformities caused by scarring, however this is a painful recovery with only temporary results. Thinning of the oesophagus due to scarring as a result of swallowing often requires patients to receive tube feeding or balloon dilation. Monitoring of chronic wounds for the development of Squamous cell carcinoma is also necessary.

Debra Ireland: Debra Ireland do amazing work to support patients and families living with EB. The money you donate to Debra will not only go towards driving research into treatments and cures for EB but also supporting families currently living with the disease and helping them with their everyday struggles. Family support workers make around 100 visits per year to help share knowledge from family to family and offering advice around health entitlements. EB patients and their careers can apply to DEBRA Ireland for respite grants and specialised equipment and funding is provided to EB medical teams at Children’s Hospital Ireland and St. James' Hospital for advanced training in EB care to ensure patients are provided with the best clinical care possible.  Debra Ireland drive research into treatments for EB by providing funding to research, supporting scientists that undertake EB research and helping identify new EB research funding opportunities, they have also helped develop an Irish and international EB patient registry.

It is so important to help raise awareness for rare diseases as awareness means funding, funding means research and research brings us one step further to finding a cure to this horrific disease! Any donation you make will make a huge difference to DEBRA and families affected by this devastating disease. If you would like to read more about EB you can follow the link below
to a quick powerpoint I have prepared: 

https://prezi.com/view/MD6eN3yv36kZHeIuid39/