Singing sensation in Stratford!
In an event organised by Catherine Jeffs (Red top, far right), the Stratford Vocals and the Golf Club Choir raised £1600 for the EI Cure Project
Catherine and Jon Jeffs are loyal friends of my parents, and have been for many years. When they learned of the EI Cure Project, they felt compelled to do something to help us, and so Catherine talked with Stratford Vocals organiser, Louise Hatton about what they could do to raise funds for our cause. Catherine and Louise came up with the event shown in the flyer. An evening of food and drinks at Stratford Sports Club, a raffle with prizes offered from local businesses, accompanied by a spectacular show from the community choir, the Stratford Vocals.
The Stratford vocals put on a super show singing popular hits like “Jitterbug”, “Super-trouper”, and “I made you look”. The act which followed was a complete surprise to me and many others. My Dad and his Stratford Golf Club friends decided that they should do something for the EI Cure Project too. Not only did many of them donate, but they decided to form a choir themselves and sing at the event. Choirmaster Peter presented them to the audience, and explained that none of them had ever sung in a choir before, but collectively decided in the power of song to help the EI Cure Project.
So there I was, in Switzerland, eagerly waiting to hear news of the event, only to receive videos of my Dad singing his heart out for us. I can tell you, tears were very quickly streaming down my face. Not only because my Dad was singing, but also because of the immense amount of gratitude I felt towards Catherine and Jon and my parents community for pulling together to put on an event like this. Most of them don’t know me, and certainly none of them have ever heard of Epidermolytic Ichthyosis before the EI Cure Project. So, with joyful tears streaming down my face, and my kids all saying “Is that Grandpa singing?”, I reflected on the immense kindness of our communities, and was just so incredibly moved by seeing everyone enjoying a wonderful evening of singing and kindness and just how good it feels to do something to help others.
I recorded a video for Catherine to share with everyone to hopefully show them how grateful I am for what they achieved for the project. In this I explained how the one song that really got the tears flowing was “True colours”. The lyrics of this song are all about not being afraid to show your true colours, and to let yourself ‘Shine’. This song epitomises what the EI Cure Project is all about. People affected by EI often feel like they have to hide, or feel like they can’t do what they truly want to, because of their skin. Either because it looks different, and people treat them differently, or because their skin is just so painful that they physically can’t do what they want to do. The EI Cure Project is all about changing this. By raising money for the EI Cure Project, Catherine and Jon and everyone in the Stratford community are helping people with EI get closer to being able to ‘Shine’ and to ‘Show their true colours’. Events like this really show the EI community that it’s OK to be different, and that people really care enough to help.
There is something extremely powerful about a community with no prior knowledge of Ichthyosis coming together to fundraise. Their collective efforts raised a stunning £1600 for the EI Cure Project, which raises our total collection to just over £37,000 (CHF42,000)!
From the whole of the EI community, I’d like to offer an enormous thank you to Catherine and Jon and the whole of the Stratford community for supporting the EI Cure Project, you are all superstars, and we can’t wait to see what comes next!
Event organisers Catherine Jeffs and Louise Hatton sing “Jitterbug” with The Stratford Vocals for the EI Cure Project Fundraiser
The Stratford Golf Club Male Choir sing “True Colours” for the EI Cure Project Fundraiser
My Dad, Roy Summers with friend, Jon Jeffs testing the microphone before the event.
Family Lark success!
Jordan Lark handing a cheque to his sister Hannah for £3,200 to be donated to the EI Cure Project
Family Lark have been very busy raising awareness and funds for the EI Cure Project. Hannah is our wonderful Logo-designer and fellow EI support group member, and has spoken out about her experiences of living with EI and our efforts with the EI Cure Project. She is also the brains behind the very first newspaper article about the EI Cure Project, please take a look at the article published in the Dunfermline Press.
Hannah’s Brother Jordan decided to support his sister by asking for friends and family to sponsor him to complete the MacTuff Scottish Summer challenge.
On the day, Jordan was full of grit, determination, and high spirits, and was 100% looking the part in his smart new ‘EI Cure Project’ shirt. He gallantly completed the course whilst getting covered head-to-toe in very cold and wet Scottish mud! At the end of the course, he surprised sister Hannah with one of those BIG cheques, and absolutely made her day!
According to the MacTuff website, their courses are:
“Built to test your physical strength and your mental grit because we believe that true character is built through true challenge!”
I personally love this description because it echoes what life is like with EI, and shows just how much Jordan loves his sister and is willing to put himself to the test to help her. The story of the Lark Family obviously touched many hearts, because their efforts raised a spectacular £3,200 for the EI Cure Project. From everyone in the EI community, we would like to express our deep gratitude to Jordan, Hannah, and their family and friends for making this happen. You have inspired others to take on similar challenges, and you have taken our total to CHF 40,000, and we couldn’t be more excited about that!
Thank you so much Family Lark, you are absolute champions for the EI Cure Project, and we salute you!
EI Cure Project becomes a Swiss Association
This week marks an important one in the history of the EI Cure Project. My husband and I legally and formally founded the EI Cure Project with the help of our wonderful friend and Lawyer Nicola Fornara of Tamagni Fornara & Associates of Lugano. This is a very important step for us all, it means we are more than just a GoFundMe, and are now a formal Not-for-Profit organisation on the Commercial Registry here in Switzerland. Once we have our official bank account set-up, investors will be able to claim tax relief on their donations, and their donations will be recognised as a gift for a charitable cause.
The purpose of the EI Cure Project is also clearly stated here:
“The EI cure project aims to raise funds for the explicit intent of providing research grants to help those affected by Epidermolytic Ichthyosis (EI). Funding may be used for pre-clinical and clinical research with the intention of finding a cure for EI”.
The formal registration of our Not-for-Profit organisation means that your donations can only be used for this purpose, and nothing else. As a formal association, we will be independently audited once per year, and regulated according to Swiss Law. So please be reassured that here at the EI Cure Project, your donations are safe, and we are very, very serious about achieving our goals, to give grants explicitly to find a cure for EI.
Collaboration with ICHTHYP foundation
Last week I met with an incredible EI family from Spain. Ruth Anton-Morales and her husband have two sons, the youngest of which is affected with a severe form of KRT1 EI with PPK. Ruth explained that she and her husband are engineers, and consequently are very experienced at running large projects and collaborations of people. They realised that every country has their own ichthyosis charity or foundation, and that it might be better to get all this expertise to work together to try to cure ALL types of ichthyosis. From this vision came the ICHTHYP foundation, and I am proud to say that the EI cure project is now a part of this collaboration alongside all the other ichthyosis organisations from across the world. For more information about the ICHTHYP foundation, please click on the logo above to go to their website.
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.
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.
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.
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.
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.