#RepsForRareChallenge Success!
For International Rare Disease Day 2024, we wanted to do our usual important work of raising awareness of visible differences and rare diseases, but we also wanted to do something really FUN to get people engaged with the subject.
On February 29th, we launched the #RepsForRareChallenge!
The #RepsForRareChallenge was a GLOBAL awareness campaign to get everyone moving and talking about rare diseases, with the EI Cure Project, and our own community in Switzerland at the centre of it.
Our TARGET was for 300,000 reps to be completed in the 6 weeks that followed Rare Disease Day. To achieve this, our challenge participants needed to complete a fun 3-minute aerobic-style dance routine and every participant who completed this would contribute 150 reps towards our goal.
The #RepsForRareChallenge could be done by anyone, anywhere; from families at home to big organised events in public spaces, everyone was invited to take on the challenge!
This awesome compilation video captures the heart and soul of what happened next…
A grand total of 1,121 people took on the challenge!
34 challenge events were held around the world;
People from 7 different countries took part;
The 3-minute routine was performed 2,033 times;
Total reps counted = 304,950!
That’s a total of 1,121 MORE people in the world who now know about Epidermolytic Ichthyosis and Rare Disease Day as a result of the #RepsForRareChallenge!
It’s hard to describe the magic of the #RepsForRareChallenge and what it did for our community, but I can tell you that it brought a whole load of joy and laughter and happiness to our home community and further afield.
Of the 34 events that contributed to our total, 29 happened in schools in their gyms, dance studios, classrooms, theatres, and sports fields; 4 took place in people’s homes in their living rooms, basements, and gardens; and 1 special community event was even organised in a Karate Dojo! The smallest event involved just 2 people, a Mum and her baby son affected with EI. The largest event contributed 65,400 reps, and included the whole school, who danced in honour of one of their schoolmates who is affected with EI.
At 22 out of the 34 events, the challengers enjoyed themselves so much that they did the routine more than once; some groups even did the whole 3-minute routine 6 times in a row! That is quite a work-out!
We had people of all ages taking on the challenge, two pre-school classes of 3 to 4 year olds, families with children of all ages all mixed in together, all the way up to families with Grandma’s and Grandpa’s determined to join in the fun and represent their Grandchildren affected with EI.
All of the events were organised by someone within the EI Cure Project, or by friends of someone with EI. Events took place in 7 different countries: England, Scotland, Wales, Switzerland, Poland, the United States, and Canada.
As you can see from all the photos, it was truly impossible to do the #RepsForRareChallenge without smiling!
There is something incredibly rewarding about getting together with a group of people to do an activity for a good cause. Everyone made mistakes, turned the wrong way, bumped into each at least once, but that just made it all the more FUN!
Perhaps the most incredible thing about doing the #RepsForRareChallenge in our daughter’s school, is that she now feels like a hero, and everyone knows her and celebrates her for how awesome she is. She has no idea who most of the 750 kids are at her school, but her story, and our mission to help young people to understand the challenges of life with a rare disease, has touched so many hearts and minds that we are really hopeful that the future for people with rare diseases will be a much brighter one.
I have been asked by many people how doing a dance challenge helps to bring in donations. The truth is that we didn’t know whether it would, but we wanted to do something really fun that got people engaged with the subject. In the 6 weeks of the #RepsForRareChallenge, we received £3,2290, $4,078, and CHF11,126! Not only did people want to join the challenge, but they also became engaged for our cause as a result.
We would like to say a huge THANK YOU to everyone who chose to support us!
The community spirit behind the #RepsForRareChallenge at our children’s school (TASIS) was nothing short of incredible. What started out as a small awareness campaign in our own children’s Elementary School, grew into a Whole School phenomenon, and eventually the Middle School and High School were asking to get involved with the challenge too. By the end of the 6 weeks, our school community completed 23 challenge events, and contributed 190,500 reps towards our 300,000 target.
We were blown away by everyone’s kindness and desire to show-up for our family.
Tom and I, and everyone at the EI Cure Project would like to extend our sincerest THANKS to everyone who got involved. I’ve said it so many times, but it really was just a super FUN thing to do, I don’t think I’ve ever smiled more whilst doing a work-out!
Thank you to everyone, and especially to all those wonderful TASIS Tigers out there, you really gave it your ALL!
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