Saturday, August 01, 2009

Official Live Life Then Give Life Advocate

I have unofficially been doing some work for LLTGL but I am now officially the advocate for Scotland. Essentially my role is just that - to advocate the charity as much as possible. I am not keen on media work involving newspapers - although we did get a fair bit of local coverage regarding the walk. I also recently did the radio interview, and of course, the Team Jac walk has been my main project for a while! I have however been quite proactive this week and contacted two of the big universities in Glasgow about setting up a stall during Freshers week - to raise awareness of organ donor issues and hopefully get some people to sign the register. Unfortunately we would have to pay (£250!) for a stall during Freshers week at one university - however their charity group has very helpfully suggested they can set one up at another time in the union foyer for free and would even help me man the stall. I am just waiting to hear from Glasgow university.

Myself and Emily have also started work on our next booklet which will look at CF and Body Image. At the moment we are brainstorming and collecting ideas from other people with CF and then we will move onto creating an online questionnaire to collect more statistics and information. I have quite a few health professionals from various areas to help with this project so hopefully we can also offer some tips and advice in the booklet. You would be surprised how large a topic this is and how many people are affected. We are looking at issues such as - problems with weight, with perception of weight/size, changes in posture, being small/young looking, having ports/pegs tubes, side effects of medication...and many more topics. If anyone with CF is reading this and would like more information please contact us at cfbodyimageATgooglemailDOTcom.

I have also had some relaxation time in between all that :-) I caught up with a couple of friends which was nice. Yesterday I visited my friend Lucie who has a new baby called Reuben. I made the mistake of taking Seb with me, thinking I had tired him out with a walk. Between Seb padding about poking his nose into everything, jumping on furniture and pawing frantically at the patio doors and poor Reuben being fractious because there was too much going on for him to sleep - we hardly completed a conversation! I think I will leave Seb at home next time! I had a lovely afternoon anyway - I hope I am going to be like one of those pretend aunties to Rueben (although he doesn't have to call me aunty -that would make me sound too old!)

I am going to a friends 30th birthday BBQ today so hoping the weather will hold out - forecast for rain but you can never tell in Scotland. Three of our friends are staying over as they live some distance away so just getting organised for that. Then tomorrow I am meeting two friends for lunch, shopping, coffee then cinema (to see My Sister's Keeper) - so a bit of a mega day out! This will allow Andrew plenty time to clear up ;-)

Finally I will leave you a link to my friend Louise's Just Giving Page. I have mentioned Louise in my blog before - she had a lung transplant last year but had many complications afterwards, so did not really gain much lung function and still has to use her wheelchair to get around. She has also developed a type of cancer that can occur after transplant and has significant heart failure. Despite this she continues to try and fundraise for both Live Life Then Give Life and another charity who supported her when she also battled a childhood cancer. She is planning a 'tree hugging' event where she has to hug a tree for an hour - don't think I could do it!

2 comments:

lulu said...

Hey hun...I hope you have a fun packed day! I am on my last few pages of My Sister's Keeper so I'd be interested to know what you think of the film! Yippie-I am so pleased you're an avocado! Looking forward to seeing you at the Advocates weekend! Thanks so much for the link to my page...you're a diamond! xxx

Tinypoppet said...

WOOOHOOO!

And we're bloody pleased to have you on board ;)