I’ve started my 5×50 challenge and have managed to pound out four 5km runs and two 5km rowing sessions in the first six days. So long as I make sure to go to bed on time (evenings are cut short when you’ve got to fit in a run and a shower before dinner) and find some new things to watch on my iPad (treadmill running is deathly dull), it isn’t too bad… yet.
In case you’ve forgotten, or failed to see the lovely badge on the front page of my blog, the sponsorship links is:
And in case you think that I’m being a bit hopeful about the potential for a “cure”, have a look at this recent article about research taking place in Oregon: http://medicalxpress.com/news/2013-08-pre-clinical-gene-therapy-reverse-rett.html
Sponsoring me on my challenge is a fantastic start – but are you then just going to sit there and watch me suffer? I hope not…
I was inspired to do the 5×50 challenge because a group of people from a Facebook CDKL5 support group were doing it. They were from the UK and the US, and I thought how great it was to do an international fundraiser for research into a disorder that affected all of us. After all, we shared stories, information and support – why not join together to raise money as well.
And now I’d like to expand that idea to you… Are you up for the challenge?
Near or far, I want you to join me for a 5km in the next 50 days (well, its 44 days now, but I won’t split hairs). If you’re near, come with me! Keep me company on a run or walk (believe me, I’ll welcome the motivation). If you’re far away (and lots of our friends and family are in the UK, US and elsewhere in the world), then set yourself a challenge to support us. Go for a 5km run, swim, cycle, rollerblade, horse ride – anything you like to do. Go to the gym, yoga, spin class for 5 days in a row. Jump on a trampoline for 5 minutes for 5 days. Dance with your partner or child every day for 5 days. If you’re too busy for 5km, then walk 1km a day for 5 days. You can set your own challenge. And you can do it to support Lil Z and research into CDKL5.
What you need to do:
All you need to do is set yourself a challenge and do it! Then tell your friends and family that you’re doing it and encourage them to donate to CDKL5 UK via my fundraising page (which is HERE in case you’ve missed it). And tell me you’re doing it so I can give you the kudos you deserve!
Why you should do it:
Because you CAN. Get out and celebrate that you have a body that will let you run, jump, swing, swim, dance, walk and do generally what you ask of it. Kids with CDKL5 can spend years of hard work learning to sit, stand or take a step. Anyone who has seen how hard Lil Z has worked – and is still working – to sit independently should be in awe at her perseverence.
And if that’s not a good enough reason, have a look at these websites and realise how important it is that more research is conducted into Rett Syndrome and CDKL5: