Story
In August 2007, our daughter Meghan (Left) was diagnosed with Cystic Fibrosis. It was a long haul to get the final diagnosis with a few inconclusive tests along the way so the family had a fair bit of time to learn about the disease and its effects. Even before we had the diagnosis confirmed, I decided that I had learned enough about the Cystic Fibrosis Trust and what it does to want to help, regardless of whether Meghan finally tested positive or not. Since then, the help and support we've received from the CF Trust, from funding research, medication, and hospital services to providing a forum where we can meet and share experiences and advice (virtually and in real life) with other CF families, has been immeasurable.
At the beginning of 2008, thanks to the generousity of friends, family and the odd total stranger, my Tandem Skydive raised just over £2000. In July of this year I will be taking part in the Cystic Fibrosis Trust's Ben Nevis Challenge and hoping to raise at least the same again. In addition, our son, James and Meghan if she's well enough, will be taking part in the Great Strides Walk Over the Water event in May of this year. At about 4 miles, this walk over the Severn Crossing is plenty of challenge in itself for a 5 year old and a two year old! You can use this page to support either trek.
Here's why we're doing it ....
Despite being the the UK's most common inherited disease, research into Cystic Fibrosis currently receives little or no government funding. Also, despite the fact that sufferers rely on a steadily growing list of prescriptions as the, currently incurable, disease progresses, CF patients are not on the list of "exempt conditions" meaning that many pay out up to £1000 per year for the drugs which they need just to survive.
Funding research and assisting with the cost of medication are just 2 areas in which the CF trust is active. Others include support services for sufferers, families and carers and a whole host of services. More details can be found at http://www.cftrust.org.uk
The important thing is that, despite annual running costs of over £10million, the CF trust is a charity wholly funded by charitable donations, receiving no government grants. Donations made to date have enabled the trust to, among many other things, fund research meaning that the average life expectancy of children diagnosed with CF has increased from just 5 years old to over 30.
Please give generously and help the trust fund further research and to help support the thousands of families affected by CF.
If you're a UK taxpayer, don't forget to "Gift Aid" your donation and make it worth another 28% as the trust can reclaim the tax.
Finally, the servers used by justgiving to process your donation are secure. If, however, you prefer not to donate on line, email me piershallihan "at" yahoo.co.uk for info on how else you can donate.
Thanks
Piers
At the beginning of 2008, thanks to the generousity of friends, family and the odd total stranger, my Tandem Skydive raised just over £2000. In July of this year I will be taking part in the Cystic Fibrosis Trust's Ben Nevis Challenge and hoping to raise at least the same again. In addition, our son, James and Meghan if she's well enough, will be taking part in the Great Strides Walk Over the Water event in May of this year. At about 4 miles, this walk over the Severn Crossing is plenty of challenge in itself for a 5 year old and a two year old! You can use this page to support either trek.
Here's why we're doing it ....
Despite being the the UK's most common inherited disease, research into Cystic Fibrosis currently receives little or no government funding. Also, despite the fact that sufferers rely on a steadily growing list of prescriptions as the, currently incurable, disease progresses, CF patients are not on the list of "exempt conditions" meaning that many pay out up to £1000 per year for the drugs which they need just to survive.
Funding research and assisting with the cost of medication are just 2 areas in which the CF trust is active. Others include support services for sufferers, families and carers and a whole host of services. More details can be found at http://www.cftrust.org.uk
The important thing is that, despite annual running costs of over £10million, the CF trust is a charity wholly funded by charitable donations, receiving no government grants. Donations made to date have enabled the trust to, among many other things, fund research meaning that the average life expectancy of children diagnosed with CF has increased from just 5 years old to over 30.
Please give generously and help the trust fund further research and to help support the thousands of families affected by CF.
If you're a UK taxpayer, don't forget to "Gift Aid" your donation and make it worth another 28% as the trust can reclaim the tax.
Finally, the servers used by justgiving to process your donation are secure. If, however, you prefer not to donate on line, email me piershallihan "at" yahoo.co.uk for info on how else you can donate.
Thanks
Piers