Research Alliance Update
We have had a busy few months here at the EI Cure Project.
Our Team of experts has grown considerably since we started last year. From our humble beginnings with Dr Julia Reichelt and Professor Matthias Schmuth, we have grown to a team of 8 amazing researchers, scientists, and doctors.
In the last 6 months we have added 6 new members to the EI Cure Project Research Alliance:
Professor Wei-Li Di (University College London, UK),
Professor John McGrath (King’s College London,UK),
Dr Joanna Jacków-Malinowska (King’s College London, UK),
Professor Jemima Mellerio (Guy’s & St Thomas’ London, UK),
Professor Cristina Has (University of Freiburg, Germany), and
Professor Sarah Hedtrich (Berlin Institute of Health @ Charité, Germany and University of British Columbia, Canada).
These talented individuals are all volunteering their time for our cause, and together we are working to find new treatments for everyone affected with Epidermolytic Ichthyosis. The fact that the Research Alliance continues to grow is testament to how much they all care about improving the lives of all those affected with EI.
At the end of April, 2024, 3 different research proposals were received by the EI Cure Project Grant Review Committee from the Research Alliance.
We are currently reviewing these applications, and trying to decide how to best use our funding. We want to fund all 3 research proposals, but we can currently only afford to give one grant. In an effort to allow all 3 projects to start this year, we have applied for additional funding from 2 other grant-giving organisations. We will learn the outcome of these additional applications by the end of August, and once the outcomes of these applications are revealed, we will be able to make definitive plans to start our research. While we are waiting, we will focus on fundraising to try to secure more funds for these important research projects.
For now however, we have more good news…
Dr Julia Reichelt has managed to secure funding for a 3-year PhD scholarship through the Qatar Foundation, and her new PhD student started his research (Gene therapy for Epidermolytic Ichthyosis) in April, 2024.
In addition to this wonderful news, our Canadian founders, Rachel Wagner and Jordan Arndt, were recently invited by their son’s dermatologist to attend the first Canadian Genodermatoses Conference in Toronto, Canada. Whilst at the conference, they had the pleasure of meeting Professor Sarah Hedtrich who is an affiliate professor at the University of British Colombia. Professor Hedtrich was awarded the prestigious Johanna-Quandt-Professorship at the Berlin Institute of Health @ Charité in Germany in 2021, and with this she was awarded funding for the translation of gene-editing for the congenital ichthyoses.
For the first part of her research, she has been conducting experiments using gene-editing with human tissue samples for Lamellar Ichthyosis in her lab. Now she would like to extend her research to include tissue samples for Epidermolytic Ichthyosis. She anticipates it will take 2-6 months to procure the necessary samples, and then she will see if her findings with Lamellar Ichthyosis can be applied to EI.
Whilst we still have a long way to go, we cannot help but feel excited about everything that is happening right now.
1 year ago, before we started the EI Cure Project, there was zero funding for EI research, and here we are now with 1 active research project, another funded research team waiting for tissue samples, and 3 further projects just waiting on funding to get started.
The EI community has a lot to feel hopeful about
I’m excited to see how much more progress we can make in 2024. It is all simply a question of raising enough funds, so please, if you haven’t already, it’s time to make your mark on our fundraising thermometer! Every donation counts, and every donation gets us one step closer to realising our dream of being able to offer curative treatments to those who want them.