1st October 2023
Dear Medical Team,
It gives me great pleasure to introduce you to a new Not-for-Profit organization whose aim is very close to the hearts and minds of my family The EI Cure Project aims to raise funds with the explicit intention of funding research to find a cure for Epidermolytic Ichthyosis (EI).
The EI Cure Project is a collaboration of patient advocates and world-class gene-editing researchers These researchers have the skills, experience, and motivation to find a cure, the only barrier to their success is a lack of funding We are currently trying to raise £300,000 ($375,000) to provide 3 PhD scholarships. You will find more details about this in the short presentation I have attached to my email
The EI Cure Project is managed by a group of parents and individuals who are affected by EI, so we are all very well motivated. We have a board of directors who work together across all divisions, and a team of global ambassadors who help to represent many different countries
If you are aware of any organizations or funding schemes that I could approach to apply for research grants for the EI Cure Project, please let me know We are all very eager to get this research started.
In addition to fundraising, everyone at the EI Cure Project wants to raise awareness of EI and help others to understand what it is like to live with and how to manage it You may find EI resources, Faces of EI, and Living with EI particularly interesting and educational for the medical team. All of these pages include patient accounts, care routines, images, care recommendations, and academic reference lists If there is any way that you could use this information, or help us to share this valuable resource, we would be extremely grateful
Many thanks for your time and consideration
Best regards,
Helen Lill (Founder of the EI Cure Project)