Community Concert Colours Shine Bright on Rare Disease Day, 28th February 2025
The pinnacle of Rare Disease Awareness Month was a beautiful and heart-warming Community Concert held on Friday night, 28th February 2025, in the Palmer Cultural Center at The American School In Switzerland (TASIS).
You can watch the highlights in this stunning video, courtesy of Vitor Mendes from the TASIS communications team here:
This phenomenal fundraising event was the first of its kind at TASIS, and was hosted by EI Cure Project Founder and TASIS Rare Diseases Service Learning Teacher, Helen Lill, in collaboration with the Opsahl Global Service Learning Program. The Concert included performances from the High-School Choir, the Elementary School Aerial and Contemporary Dancers, High-School Aerial Dancer Niva Smith, and a fun group of Elementary School students from the audience. They all performed alongside the newly formed band ‘Rare Generation’, composed of many members of the TASIS Performing Arts team, alongside Elementary- Middle-, and High-School teachers, Alumni, and Elementary-School Parents.
Rare Generation (from left to right, top to bottom): Julie Frazier-Smith, Christof Zanecchia, Erika Cramp, Rich Cramp, Melody Zanecchia, Matthew Frazier-Smith, Chris Fogal, Tim Venchus, Angela Carota-Dusing, and Kerry Venchus
In the words of TASIS Performing Arts Director Erika Cramp:
“This was a very special event, drawn together by the community, FOR the community to enjoy”.
The Concert was orchestrated by Helen Lill to take the audience on a journey of what life is like when you have a rare disease, including personal testimonies from people affected with EI who experience daily challenges as a result of their condition.
Included in the extraordinary set-list were songs from John Mayer, The Beatles, The Foo Fighters, Cindie Lauper, Imagine Dragons, Florence and the Machine, The Kungs, and Keala Settle.
In between performances, Helen explained why rare diseases need support, and why she founded a charity (The EI Cure Project) to help her daughter, one of the youngest members of the TASIS community, who is affected with 1 in 300,000 rare blistering skin disease, Epidermolytic Ichthyosis (EI).
It was an absolute delight to see members of the TASIS faculty performing alongside their many talented students. There were so many beautiful moments where you could see how much of a joy it was for everyone to share the same stage, united together as a powerful community for a great cause.
The event was a huge success, and raised a staggering CHF 35,000 for EI Cure Project.
This amount will fund a PhD student to perform gene-editing research for 1 year, and is the most that EI Cure Project have ever raised in a single month. It is a phenomenal achievement for such a little-known rare disease, and is testament to the incredible talent and dedication of everyone who gave their time and energy to our cause.
If you would like to see the concert, you can watch it in full here:
Founder Helen Lill would like to take this opportunity to thank everyone in the TASIS community for their immense support and kind feedback, and to express her deep gratitude to all the performers for giving their hearts and minds so freely to help with this incredibly special project.
