Cure EB (Formerly Known as Sohana Research Fund)

Delivering cells for treatment of children with EB

Epidermolysis Bullosa is a very painful genetic skin condition that causes blistering and skin loss at the mildest trauma. A recent clinical trial suggested that mesenchymal stromal cells could bring benefit to children with the condition and we aim to deliver this at Great Ormond Street Hospital

history Campaign has now closed

It ran from 12:00 PM, 28 November 2017 to 12:00 PM, 5 December 2017

Registered Charity in England and Wales (1158672)

open_in_new http://www.cure-eb.org
Check mark Match funded

Campaign target

£10,000

Amount raised

£23,380

Donations

33

    Categories

    Helping

Location

Situation

Epidermolysis Bullosa is currently an incurable condition with no effective treatment. Children with the condition have symptom management in the form of dressings and pain relief. Blisters have to be pricked and wounds dressed on a daily basis which is very painful and arduous time for the children concerned. Every aspect of a sufferers life is affected and every action is painful, even simple everyday tasks such as eating and walking. The condition is life shortening due to skin cancer

Solution

The project aims to improve the quality of life for children with EB. Evidence from the trial suggests that the cells reduce inflammation and therefore reduce discomfort and pain. Wound healing times improved and the frequency of trauma and blistering reduced. The time taken to complete the dressings was shortened which had an impact on family life. Children were happier and more able to participate in daily activities. Whilst not a cure this would establish an interim treatment.

  • SRF has given us hope for the future that there could possibly be a cure for this terrible condition. We can only imagine how happy we could be as parents if our one and only dream came true and Poppy could live with a life without pain

    — Kate Asher, mum of Poppy who is 4 years old

  • The difference after infusions was unbelievable. Raw areas healed quickly, he slept normally, itchiness disappeared. It was big relief for him and for us. We stopped painkillers and anti-itch medicines. Amounts of dressings dropped 30%. I believe none of this would have happened without SRF Funding

    — Linus Misurenkovas, Father of Gabrielius who was two years and 9 months old at the time. He is now four years old

  • The difference after infusions was unbelievable. Raw areas healed quickly, he slept normally, itchiness disappeared. It was big relief for him and for us. We stopped painkillers and anti-itch medicines. Amounts of dressings dropped 30%. I believe none of this would have happened without SRF Funding

    — Linus Misurenkovas, Father of Gabrielius who was two years and 9 months old at the time. He is now four years old

  • SRF has given us hope for the future that there could possibly be a cure for this terrible condition. We can only imagine how happy we could be as parents if our one and only dream came true and Poppy could live with a life without pain

    — Kate Asher, mum of Poppy who is 4 years old