Dear Family and Friends,
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 our family The EI Cure Project aims to raise funds with the explicit intention of funding research to find a cure for the rare skin disease that affects our family, and causes us significant challenges on a daily basis
The organization is a global one, and has been set up with branches in Switzerland, the UK, and in America. EI is a very rare disease, affecting only 1 in 300,000 people, so if we want to find a cure for it, all of our communities around the world need to pull together. The funding for research for rare diseases is very limited because there is no profit to be made from curing a rare disease. In summary, if we don’t raise the funds ourselves, a cure will never be found.
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 They have already proven that it is possible to switch-off the faulty gene and cure cells within a lab setting, but they need to do more research in order to create a clinical product and provide enough evidence to support a human clinical trial We are currently trying to raise £300,000 ($375,000) to provide 3
PhD scholarships
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. Collectively we are determined to find a cure for this awful skin disease, and allow our children a better, happier, and significantly more pain-free life than is possible with the burden of EI.
You will find lots of great information on the website, and there are also a couple of podcasts if you’d like to learn more about EI or get to know the researchers and what they propose to do I would be so grateful if you would consider sharing the news of the EI Cure Project within your own community, and if you might consider making a donation yourselves, or asking your company or business to consider making a donation, or perhaps holding a fundraising event for this worthy cause.
Thank you so much for your time and consideration
Best regards,
Helen Lill (Founder of the EI Cure Project)Website: https://wwweicureproject com/