#RepsForRare Challenge 2024
Our plans for Rare Disease Day this year are BIG!!!
We’ve made this really awesome music video in hopes of inspiring everyone to get moving AND talking about the EI Cure Project…
Our music video was adapted from the original track “Clap your Hands” by The Kungs and we made the video with friends and colleagues from our children’s school. We truly had a blast doing this, so we’re certain that you will have a great time too!
Take a look, and see if you can stop your toes from tapping…!
We hope we have inspired you to join us…
Our goal is to get 2,000 people to do our routine in order to reach our target of 300,000 Reps!
Epidermolytic Ichthyosis (EI) is really rare. It only affects 1 in 300,000 people, so that’s why we’ve set our target at 300,000.
The challenge will run from February 5th to April 22nd, so there’s plenty of time to get involved.
What do I need to do to get involved?
We would like to invite you to host your own #RepsForRareChallenge event, and raise awareness of the EI Cure Project at the same time.
Don’t be afraid, you don’t need to figure out the routine from our music video, we made a #RepsForRare2024_Instructional video to guide you through the whole thing!
So, turn the music up, and get moving those feet to the beat right now!!!
If you’d rather just have the music, here’s our awesome track for you to listen to or use for your event. I swear, as soon as we recorded this, I listened to it on repeat for 3 days straight! It’s totally addictive, and so up-lifting.
This is our anthem!
Here’s a short infographic to tell you what you need to do to organise your #RepsForRareChallenge event…
A few extra details please…
On the day of your event, we would love it if you could ask one person to take pictures and videos for us, so that we can verify how many people took part, AND so that we can make one of those awesome compilation videos showing everyone that gave their time and energy for our cause! We would also love it if we could flood social media with posts so that even more people learn about EI and the EI Cure Project.
All you need to do is:
1) E-mail a 1-minute video or picture to: eicureproject@gmail.com
2) Upload your event picture or short video to social media using #EIcureproject and #RepsForRareChallenge
3) Tell us about your event by filling out this short form.
It really is that simple!
Now get ready to have some FUN!!!
If you still feel like you’re lacking the information you need, feel free to contact us, or read on and maybe we’ll help with these…
Frequently asked questions
Q1) I’m really nervous about fundraising, but want to get involved, how can I do all this?
Don’t overthink it! If you just want to do this at home in your living room or garden with your nearest and dearest, that sounds absolutely perfect to us!
Q2) I’m not a sports instructor, how can everyone do the routine together?
You can use the #RepsForRare2024_Instructional video OR you can ask a friend with the right skills to lead your group. As you can see from our #RepsForRare_Music Video, we had children from as young as 2 years doing the routine. It really doesn’t matter if people make mistakes, it’s really just about having fun together and raising awareness for a good cause.
Q3) How can we raise money for the EI Cure Project?
There are so many ways to do this, but some of the simplest are to advertise that you’re doing this for the EI Cure Project, and make sure that the link to the website is on your advertising posters and/or social media posts.
Some other examples of how to raise money as part of your event: ask people to give you their spare change in a bucket, organise a dress-down day at the office and charge a small fee, organise raffle prizes for your event and charge a small amount for raffle tickets, or you could organise a bake-sale or pot-luck event where everyone brings a dish and you charge a small fee for the food. On a larger scale, if you decide to run your event at your office, workplace, sports club, or gym, you could ask the owner to make a corporate donation or match any funds that you raise.
Q4) How can we manage donations?
If you would like to raise money for the EI Cure Project before, during, or after your event, you can do this in many different ways. You can ask people to give you cash on the day, you can charge an entry fee, or you can simply ask people to make a donation via the website. If you take cash, you can pay it into your account and then make a donation through the website.
Q5) What if I can’t organise my event for Rare Disease Day on February 29th?
We understand that February 29th might not work for you! Please don’t worry, the date is just a guide, because it’s Rare Disease Day on February 29th. We are running the challenge from February 5th to April 22nd, and then we will create a video of everyone who got involved for Ichthyosis Awareness Month in May.
Q6) How much time should I plan for my event?
Plan for a minimum of 1 hour for your event. For our large group, it took us 40 minutes to get to know the routine! It will depend on how large your group is, and how able your participants are. Our group included a lot of young children, so that increased our time needs. Don’t get too worried about the routine being perfect, just focus on having FUN!
Q7) What equipment will I need for the event?
You need to be able to play music, and if you want to use the #RepsForRare_Instructional Video, you will also need a screen to show your participants what to do. A TV or computer will work if your group is small. If you have a large group, you could also use a laptop and projector if you have them. You also need enough space for your participants to move around. To follow the routine, each person will need to move approximately 2 metres forwards and backwards, and 2 metres from side-to-side. To take pictures and videos of your event, you’ll also need to dedicate someone to that job, and for them to have recording equipment to use for this purpose. For the majority if people, this equipment will be their mobile phone.