Thursday 30 July 2009

Water Baby Eva

Well done to Eva Higgins, a little person with CF, who has just got her 5 metre swimming badge at only 2 years 1 month old! This means she can swim 5 metres with no aids - very impressive considering she has missed a lot of lessons through being ill and having IVs during the past year.

Eva is pictured above with her swimming instructor.

Tuesday 28 July 2009

Jordy Pordy at Edinburgh Fringe

A new play, Jordy Pordy: Taking the Bull by the Horns, will debut at the Edinburgh Fringe Festival this August.

The play is an autobiographical one-man show written and performed by Jordan Herskowitz. The play tells the story of Herskowitz's life as a middle child of two brothers diagnosed with cystic fibrosis, being a Jewish individual growing up in Texas, and performing as a professional mascot.

The show is on from 6-30 August and anyone with a CF connection can buy group tickets at a discounted rate for the opening week only. Tickets for ten or more individuals are £6 pounds. Regular price tickets are £8, £7 concessions.

To book call the Edinburgh Fringe Office at 0131 226 0000 and for more info visit

Friday 24 July 2009

Any budding Spielbergs out there?

We are looking for lots of videos to favourite on our YouTube channel - anything about day to day life with CF.

You can upload films from your video camera or mobile to YouTube then just send the link to . It's quite easy so give it a go if you haven't done it before.

Have a look at some of the videos we've favourited already

We look forward to seeing your handiwork, have a good weekend everyone and get filming!

Wednesday 15 July 2009

Mad people on the fourth plinth

We're loving all the people taking part in the One and Other project. Every hour, 24 hours a day for 100 days, a different person will step up to the fourth plinth in Trafalgar Square and help make a living portrait of the UK.

Of course it has been a great opportunity for charity fundraisers to get up there and raise a few bob by doing something silly...step forward Susan Linnell who spent an hour on the fourth plinth at 1am this morning dressed as a rabbit whilst bouncing on a spacehopper! She has raised £765 for the CF Trust so far so well done Susan!

You can watch her in action here and sponsor her here

If you are taking part let us know by emailing

Monday 13 July 2009

Lunar World Record

An incredibly ambitious project to create the largest ground-based mosaic image of the Moon, and enter the Guinness Book of Records will raise vital funds for the Cystic Fibrosis Trust.

A team of people, comprising of some of the world's foremost astro imagers, gathered at the home of Sir Patrick Moore, a long-term supporter of the Trust, in April this year. Using specialist astronomy cameras with telescopes and special software to compile and mosaic the frames, they have created an image which has eclipsed any other so far taken of the Moon.

All proceeds from the use of the final image, which is already being mooted for use at various planetariums around the UK, and is available to view and purchase at, will be donated to the CF Trust.

Monday 6 July 2009


We still have some charity places available for this year’s BUPA Great North Run on Sunday 20 September.

The BUPA Great North Run is the world's biggest half marathon. Every year thousands of runners take to the streets offering a fantastic atmosphere.

All runners will receive a running vest to wear with pride on the day, a fundraising pack, newsletters, access to our online interactive training zone and an invite to the post-run party complete with masseurs

Charity places are available until this Friday, 10th July. You can find out more by contacting 0845 859 1100 or email

Wednesday 1 July 2009

Well done Alex!

CF Trust fundraiser Alex Crossland was the fastest on two wheels at the Capital to Coast Cycle Challenge for Charity on Sunday 28 June.

The scenic ride ending up in the picturesque seaside town of Hove in East Sussex was organised on behalf of several charities, including Norwood, The Down’s Syndrome Association, The Cystic Fibrosis Trust and Heart’s Have a Heart appeal. More than 1,600 cyclists got in gear to raise £300,000.

The fastest rider was 18 year old Alex from Haynes near Bedford, who completed the 60 mile route from Esher in three hours and 10 minutes. Alex, who was sponsored by Virgin Active, was riding on behalf of the Cystic Fibrosis Trust in memory of his older sister Victoria, who suffered from the condition and died last year at the age of 23.

He said he enjoyed the ride, particularly the first half, but added: “Bedfordshire doesn’t have a lot of hills so Devil’s Dyke was a nightmare.” The former Bedford School pupil, who lost about four stone during his eight-month training, is now set to raise an incredible £1,500.

Riders chose from three different routes this year: a 60 mile ride from Esher College in Surrey; a gentler 30 mile ride beginning at Haywards Heath in West Sussex; and a new 60 mile Hove to Hove circular route, starting and finishing on Kings Lawns at the bottom of Grand Avenue. They enjoyed the blazing sunshine and were refreshed by the ample food and drink provided by the organisers along the route to help them cope with the tough cycling challenge.
The event was endorsed by well-known personalities, including Olympic cycling gold medallists Rebecca Romero and Bradley Wiggins, TV presenter Fern Britton and Mayor of London Boris Johnson.