Find a cure for Epidermolytic Ichthyosis (EI)

Epidermolytic Ichthyosis (EI) is a very rare condition (1 in 300,000) where the skin is both extremely fragile and blisters easily, but on the joints and flexures the skin also grows very thick, hard and brittle and can limit mobility. This makes everyday life a challenge, and those affected must spend up to 3 hours daily just caring for their skin to make them comfortable and reduce the risk of potentially fatal infections.

My name is Helen, and I’m a mother to an amazing little girl with EI. I also run a global support and advocacy group to help other families affected by EI, and our community really needs your help.

EI is a genetic condition, with dominant inheritance, and there is currently no cure. We can only relieve symptoms, and the available options to do this are inadequate. Gene editing research has proven it is possible to correct the faulty genes that cause EI, but because the condition is so rare, there is no motivation for stakeholders to fund further research.

In collaboration with the UK Ichthyosis Support Group (ISG), we have found a team of experienced gene editing researchers (Led by Dr. Julia Reichelt and Professor Matthias Schmuth) who have the necessary skills to make a cure a reality, but we need to fund the project. For more information please visit https://www.eicureproject.com

The plan is to raise CHF 300,000 (CHF = Swiss Francs) to fund 3 PhD students over 3 years to conduct the necessary preclinical research work to find a potential cure for EI. The hope is that this would take the form of personalised gene editing delivered via a cream or regular injections.

We would be forever grateful for any donations and support for this worthy cause. We hope we can find a way to give more time for enjoying life and less time for skin care and pain for those living with EI.

Please help us to reach for the sky, and find a cure for EI! 

Thank you so much for your time, and I hope you can help spread the word and donate today!

PS. For our friends wanting to donate from the US, please know the exchange rate is CHF 100 = USD 107. You can enter the number of swiss francs you wish to donate, and your credit card will do the conversion from USD. Please don't hesitate to contact me if you have any queries or concerns at [email redacted]