Rare Disease Day - February 28th

February 28th is International Rare Disease Day, and this year I knew that this would be a great opportunity to raise awareness of rare diseases whilst promoting the EI cure project. Our children’s school, and Tom’s workplace is nothing short of spectacular. The American School in Switzerland (TASIS) is one of the most expensive boarding schools in the world, and consequently many of the future world leaders in all aspects of life are here for us to talk to. We are very lucky to have many influential people around us, and so we feel that if we can get them to understand the plight of rare diseases and the phenomenal science behind finding a cure, then we may actually find a way to find a person who may truly be able to make a difference.

So on Rare Disease Day, we invited TASIS students to wear stripes to show their support or “Show their Stripes”. Tom and I visited every classroom (6 classes, Pre-K to First grade) and talked to the kids about what Rare Disease Day means, then read a storybook about kindness and diversity and helping someone with a health problem (Itchysaurus, The Hospital Dog, and Sylvia’s Itch). After the story, we used an ‘Inspiration board’ of images to help the kids to think about how visible differences can influence our thoughts and behaviours, and then we finished up with a fun zebra colouring activity bearing the EI cure project logo alongside the Rare Disease Day logo.

The communications team at TASIS were kind enough to support our desire to get the message about Rare Disease Day to the whole school community, and as a result our Rare Disease Day event became a news story for the whole school bulletin. There are approximately 750 students at TASIS. Many of them won’t look at the bulletin, many of those that do see the story won’t click on the link, but really we just need a few people to listen, and that might just be enough to change many lives.

From Rare Disease Day on February 28th to the day after the TASIS school bulletin was released, we received 22 donations, with a total value of CHF 4,058. Maybe 3 of those donations were from others sharing the website on Facebook, but the vast majority of donations came as a result of Tom and I getting out there and talking to people. The Rare Disease Day event was such a success, and I’ve made some new connections with other rare disease charities working in Switzerland as a result. In addition, the whole community is actually TALKING about rare diseases, and the teachers are all abuzz with ways that they can teach the kids for next years event. In summary, Rare Disease Day rocked, and we loved every minute of it.

So please, have a think about ways that you can get out there and talk to people in your own communities. What I’ve learned about fundraising in these past few weeks, is that when it comes to getting donations, the personal connection counts so much more than anything else.