Helen Lill Helen Lill

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.

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Helen Lill Helen Lill

30,000 in 30 days!

It’s now been 30 days that we’ve been fundraising, and I’m absolutely delighted to be able to say that we’ve raised CHF 30,000! This has been no easy task by any means and I feel a little as though I now have a new full-time job. I can’t deny however that I’ve loved everything about it, and am still so excited to see where the month of March leads us next.

In the past 30 days, we’ve launched a GoFundMe, we’ve developed a new logo, Tom and I built a website (And we’re both secretly a little bit proud of ourselves for this first-time achievement in our 40’s), we hosted a Rare Disease Day event at our children’s school, I built a new website feature called “Faces of EI”, AND I just finished uploading our very first attempt at a Podcast (with a little help from tech-savvy Tom, phew!). All in all I’d say that February was a busy and productive showcase for how seriously I believe in the EI cure project. I hope that you can all see this and will continue to support this life-changing cause.

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Helen Lill Helen Lill

Logo design

This week I worked with the very talented Hannah Lark, of Hannah Lark Design. Hannah is incredibly important to all of us in the EI community, she is always there with her positive attitude and reassuring new parents that life with EI will be okay no matter how scary things might seem. Hannah lives her life with EI with grace, dignity, and beauty, and is such an inspiration to myself and many others. It is truly an honour to have been able to work with Hannah for the EI cure project logo.

The logo design incorporates many genomic symbols, and a personal dedication to our daughter Arienne. Her silhouette represents the shape of a chromosome, and she holds the DNA double-helix above her head. The section of DNA high-lighted in red represents the EI pathogenic point mutation. It is this point mutation that the researchers must edit and correct in order to find a cure.

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Helen Lill Helen Lill

Early meeting of major milestones

The graphs below demonstrate the number of daily donations and how our total (Cumulative) donations have increased over the first two weeks of fundraising. It is clear that whenever we boost our presence on the various social media sites, the number of daily donations increases. The first 3 days correspond with the launch of the GoFundMe page, an increase in donations at day 7 was observed with a reminder sent on Facebook, and another steady boost in donations was observed at day 13 after my posting of a personal video to explain the EI cure project on Facebook, YouTube, Instagram, and TikTok.

After only 3 days, the total donations had risen to CHF 10,000, and after the first 2 weeks, the total donations had risen above CHF 25,000. The EI community is humbled by the level of support that we have seen so far, and we are all so very grateful.

Thank you to everyone who has donated, shared, and supported us so far. We still have a very long way to go, but we are so glad of how far we have already come.

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Helen Lill Helen Lill

A Valentine’s Day gift

On day 12 of fundraising, we were surprised and delighted to receive a donation of CHF10,000 from an anonymous donor. Whilst every donation is a gift that the EI community is extremely grateful for, there is something incredibly special about someone choosing to donate such a large sum of money to our cause. It came at a time when the frequency of donations had begun to lull, and was just such a positive boost to everyone. So, whoever you are, thank you for our Valentine, it meant the world to all of us.

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