Spring has sprung, the Samsas go bowling and CF Week is just around the corner

Hi again, thankfully it finally feels like summer is on its way, the grass has been mowed for the first time this year and the trampoline has been cleaned down ready for extra physio and fun over the coming months! We bought the trampoline a few years ago thinking it would be a great way for us all to keep fit and might give us all a night off ‘normal’ physio every week – Beth broke her ankle on it after three weeks – sometimes it seems like everything is against you!!

The whole Samsa family went bowling last week, a local carers group put on an event and invited us along, they recognise that sometimes it isn’t only the child with Cystic Fibrosis that needs a break and a bit of support, siblings are affected too. The helplines at the CF Trust (Tel: 0300 373 1000) can offer advice and support for all the family when things gets too much, often putting you in touch with other local networks. I’d forgotten what fun bowling is, competitive mum appeared but it was worth it to beat Harry and Jay in the first game – I lost the second one, badly….

Momentum is building for Cystic Fibrosis Week (8-14 May) it really is going to be a great thing to be involved in this year. In Dunstable we’ve got our annual Bluebell walk in Ashridge Forest, Graham is organising a small golf day (an excuse for a day off work I reckon) and the Nannies are doing a Big Cake Bake, I’d love to hear what you’re planning, maybe I can help? You can email cfweek@cftrust.org.uk The events are coming through thick and fast onto the website now, www.cfweek.org.uk it’s keeping Nigel and Steve, our despatch team, really on their toes getting all of the fundraising materials out.

Catch up again soon,

Nikki x

Nikki hijacks the blog!

Photo: Beth and Jenn after destroying Nikki's kitchen!

Hi I’m Nikki Samsa and for the next few weeks I’m going to hijack the CF Trust blog! This first entry is a long one, with a bit of background; I’ll try not to bore you too much over the coming weeks though!

I work, full time, as a fundraiser at the CF Trust, supporting lots of people like you to raise money for our favourite charity. Living at home with me are my husband, Graham, our three kids, two boys and girl, Harry (17), Jay (14) and Beth (10) and a dog, Ollie. Beth has CF, the reason we all got involved with the CF Trust in the first place.

Part of my job at the CF Trust is to work with lots of the other staff on Cystic Fibrosis Week which runs this year from 8-14 May. Over the next few weeks I’m going to share some of the background of the campaign and the ups and downs of how it all progresses.

I’m also going to chat about living and working with CF, and the realities of having kids, working full time, fundraising, socialising, medication, dog walking, exercising and trying to fit in life in general!

Two of the highs at work of this week were that the CF Week microsite went live –yay!! It could still be it bigger and better so please let me know of ways we can do this by emailing us at cfweek@cftrust.org.uk. We chose five people living with CF to be our faces of the week and they are all amazing – have a look and see their stories at www.cfweek.org.uk The regional newsletters were finally posted….after agonising over whether we had put all of the information that you would want to see in there we pressed the button and they were sent out. Along with the hard copy mailing we trialled sending the letter out via email to anyone we had email addresses for – this saves us money so I hope you don’t mind receiving an email rather than a mailing through the post. There were a couple of teething issues doing it this way but there always is when you do something for the first time – just ask my Harry about all the mistakes I made with him!

At home it was Jay’s birthday so we had the usual birthday evening with extended family round for pizza and pasta. It was a rowdy and noisy affair, as it can be when the age varies from my two year old nephew to Great Nanny who’s 90! Beth and her friend Jenn had made the birthday cake the night before; I’m certain two girls have never made more mess (and then abandoned it for me to clean up!) It always makes me chuckle when all the family are round, the pills that come out in the evening for Granddad’s heart, Nan’s diabetes, Great Nan’s indigestion and Beth’s CF would fill many with fear – in our house it’s a championship to see who can swallow the most in one go – Beth always wins – six Creon at a time, she can’t be beaten!

I’ll write soon

Nikki x

Happy Birthday Tim!

We would like to wish Tim Wotton a very happy 40^th birthday! Tim has CF and has been blogging about his life over the past few months as part of his ‘countdown to 40’, talking about his view of the world, his struggle to become a father, his experiences with CF and the power of positive thinking amongst other subjects.

Thanks for sharing your experiences Tim and enjoy your celebrations today with your family. http://timwotton.wordpress.com

How much time have you spent on treatment?

When reading Tim Wotton's blog this week the following really caught our attention.

Tim reckons that over his lifetime he has swallowed 280 tablets every week, which works out at 14,560 a year and 364,000 over the last 25 years.

Also during this time, he's had 10,000 nebuliser sessions, 18,200 physiotherapy sessions, over 50 IV treatments, 600 visits to his chemist and 250 visits to Frimley Park hospital.

We all know CF is a very treatment-heavy condition to live with but these figures really pack a punch. How much time do you think you have spent on treatment over the years? How many tablets do you think you've taken? Do comment on Tim's blog and let us know.

Young, Deaf and CF

Afternoon all

We've just posted a great short trailer on our You Tube page. Film student Holly Cocker has made a documentary about a young man with CF, Pete Franklin, who also has hearing loss. The documentary follows him as he makes the decision whether or not to have a transplant.

Young, Deaf and CF has been accepted into the British Shorts Film Festival in Berlin this month. Keep up to date on the progress of the documentary on Holly's blog http://hollycocker.tumblr.com/, the film website is http://www.youngdeafandcf.tumblr.com

Wembley opticians defeat the Ten Tors!

Congratulations to Rakesh Kapoo, Bhakti Patel, Ananda Sena, Rashid Mahmood, Sonal Parekh, Sherya Ghandi, Kavi Kotchea, who braved the weather and completed a 50 mile trek of the Dartmoor Ten Tors raising £1,277 for the CF Trust last November.

The group of opticians from Wembley took just 2 days to complete the challenge, climbing tors as high as 570m despite the treacherous conditions encountering snow, wind, fog, ice, sun and rain.

The team completed the challenge for some of their young customers who have CF after being impressed with their 'get up and go’ attitude and positive thinking.

Well done to all of you for completing the challenge!

QVC and Honora Pearls to support the CF Trust

On Wednesday 22nd December, the shopping channel QVC will be supporting the Cystic Fibrosis Trust.

Their first ever ‘QVC Cares Day’ will feature a selection of top brands who have chosen to support their favourite charities throughout the day and we are thrilled that Honora Pearls are supporting the Cystic Fibrosis Trust.

This is a great opportunity for that bit of last minute Christmas shopping as well as finding out more about our charity work with regular short film clips showing throughout the day. The days’ event will include a standard programming schedule with airtime allocated for the promotion of our charity as well as the opportunity to link on-air sales with an opportunity to donate also.

‘Honora Pearls’ will feature a wonderful range of jewellery products throughout the day and is generously donating 15% of the purchase price to the Cystic Fibrosis Trust.

Find out more on the QVC website

Happy shopping!