Cure EB

Elspeth West

Elspeth West

Elspeth West

My Story

So.... less than 7 weeks before marathon day, I heard there was a spare place going.  I can train for a marathon in under 7 weeks, right?  Right?!  
Luckily, I quite like running.  Although never a marathon.... First day of proper training (18 miler, see below) began during torrential snowy rain.  Soggily bracing.  Thanks weather!!  

Anyway.  Important thing is it's for the most heart breaking cause.  I am hoping to raise as much awareness and money as possible for a rare genetic skin blistering condition that has a devastating effect on its sufferers and their families.

The disease is Epidermolysis Bullosa; hard to say, hell to live with. In children born with the disease, the proteins that glue skin layers together are defective or even missing. The slightest friction (a knock, a bump, a hug) can cause layers of skin to shear off, resulting in open wounds all over the body, both inside and out.

Children born with EB live with pain every moment of their lives and undergo hours of bandaging/wound dressings every single day. Sufferers who survive into adulthood often end up wheelchair-bound as young adults and diagnoses of skin cancer are dreaded, but common after the age of 20.

There is currently very little treatment and no cure for EB.

Cure EB is a charity that was founded by local parents Sharmila and James Collins in 2011. James and Sharmila's eldest daughter, Sohana, was born with Recessive Dystrophic EB (a particularly lethal type of EB), who (like my daughter, Emily) attended St Christopher's School in Hampstead.  

Every penny raised by Cure EB is poured into medical research; experts all over the world are pulling together to find a way of easing the suffering of EB patients.

The good news is that there have been promising early phase trials looking at stem cell and gene therapies. All of this is incredibly positive and a cause for optimism; however substantial amounts of money are now needed to allow these early trials to proceed first to clinical trials and then to treatments available to all. And as devastating as EB is, as a rare disease (less than 500,000 patients worldwide), it is never first in line for funding.

Any donation would be so gratefully received. Thank you so much!

Cure EB

Raising for:

Cure EB
89%

Funded

  • Target
    £2,000
  • Raised so far
    £1,775
  • Number of donors
    41

My Story

So.... less than 7 weeks before marathon day, I heard there was a spare place going.  I can train for a marathon in under 7 weeks, right?  Right?!  
Luckily, I quite like running.  Although never a marathon.... First day of proper training (18 miler, see below) began during torrential snowy rain.  Soggily bracing.  Thanks weather!!  

Anyway.  Important thing is it's for the most heart breaking cause.  I am hoping to raise as much awareness and money as possible for a rare genetic skin blistering condition that has a devastating effect on its sufferers and their families.

The disease is Epidermolysis Bullosa; hard to say, hell to live with. In children born with the disease, the proteins that glue skin layers together are defective or even missing. The slightest friction (a knock, a bump, a hug) can cause layers of skin to shear off, resulting in open wounds all over the body, both inside and out.

Children born with EB live with pain every moment of their lives and undergo hours of bandaging/wound dressings every single day. Sufferers who survive into adulthood often end up wheelchair-bound as young adults and diagnoses of skin cancer are dreaded, but common after the age of 20.

There is currently very little treatment and no cure for EB.

Cure EB is a charity that was founded by local parents Sharmila and James Collins in 2011. James and Sharmila's eldest daughter, Sohana, was born with Recessive Dystrophic EB (a particularly lethal type of EB), who (like my daughter, Emily) attended St Christopher's School in Hampstead.  

Every penny raised by Cure EB is poured into medical research; experts all over the world are pulling together to find a way of easing the suffering of EB patients.

The good news is that there have been promising early phase trials looking at stem cell and gene therapies. All of this is incredibly positive and a cause for optimism; however substantial amounts of money are now needed to allow these early trials to proceed first to clinical trials and then to treatments available to all. And as devastating as EB is, as a rare disease (less than 500,000 patients worldwide), it is never first in line for funding.

Any donation would be so gratefully received. Thank you so much!