Raising money for the Cystic Fibrosis trust by doing bike ride in July 2008

Let_Robinson_Sing

Hello

I am doing the 30 mile bicycle ride from Haywards Heath to Hove on 13th July 2008. I was considering doing the 60 mile one from the capital to Hove but I decided that I would do that next year.

http://www.capitaltocoast.org.uk/index.cfm?Content=1&Menu=1

I am doing this ride for the Cystic Fibrosis trust as my fiance, Sarah, suffers with this illness. Visit here to find more information about this illness http://www.cftrust.org.uk/

Any donation of any amount is greatly appreciated throughout the Cystic Fibrosis community.

You can donate via my justgiving website https://www.justgiving.com/letrobinsonsing

If you have any questions or queries, please feel free to ask.


All the best

Alex Robinson


(I apologise if i have violated the rules of this board by posting this)

Sue-UU

Hi Alex,

I can't see anything wrong with you posting here as the "Race For Life" is on here in exactly the same way as yours is done.

I wish you all the very best with the ride Alex, that's a fair old way to go, but worth every single mile for the illness you're doing it for, for the very dear girl you're doing it for too! Recently hubby and I watched the amazing story of "A boy called Alex" on Channel 4 (Cutting Edge) which was all about him and his CF, awful to watch - but I'm so pleased we didn't miss it as it was such an eye-opener to what can still be achieved despite such ailments.

All the VERY best Alex, your fiance too.

Sue.

ahai1

Yes I agree. What is the omey going to be spent on by the CF Trust?

Let_Robinson_Sing

ahai1 wrote: »

Yes I agree. What is the omey going to be spent on by the CF Trust?

From their website they state 'Please help us fund our vital research to treat the symptoms of, and find an effective treatment for, Cystic Fibrosis.' - http://www.cftrust.org.uk/help/howtodonate/

Money raised also goes into improving care for CF sufferers at hospital http://www.cftrust.org.uk/aboutus/what_we_do/improvingcare/ (For example, at Bristol Royal Infirmary there is a small ward dedicated to CF sufferers which was funded by the CF trust.)

Also money raised goes to welfare grants that the CF trust provide http://www.cftrust.org.uk/aboutus/what_we_do/welfaregrants/

Let_Robinson_Sing

Sue-UU wrote: »

Hi Alex,

I can't see anything wrong with you posting here as the "Race For Life" is on here in exactly the same way as yours is done.

I wish you all the very best with the ride Alex, that's a fair old way to go, but worth every single mile for the illness you're doing it for, for the very dear girl you're doing it for too! Recently hubby and I watched the amazing story of "A boy called Alex" on Channel 4 (Cutting Edge) which was all about him and his CF, awful to watch - but I'm so pleased we didn't miss it as it was such an eye-opener to what can still be achieved despite such ailments.

All the VERY best Alex, your fiance too.

Sue.

Thank you so much sue .

me and OH also watched 'A Boy Called Alex.' The programme was very good and did put quite a lot of info about CF into a short programme.

Last i heard, I think that Alex got a scholarship at Cambridge, it was on the CF trust forum but i've not been able to find it.

Once againe Sue, Thank you so much.

xxx

morg_monster

Well done Alex. I'm very familiar with CF as it runs in my family; I have 3 cousins with CF; one is 14, and the other two are twins - very sadly one died in 1995 a couple of years after a heart+lung transplant but her brother is still going strong at 30 with his own v successful business.
The research has come on so much in the past twenty years, it really is amazing. When I compare my memories of the twins as kids in the 1980s (wolfing down 10 or 20 big capsules to get through lunch, not allowed much fatty food, percussion physio twice a day at least) with the 14 yr old (one small tablet before a meal, can eat whatever she wants, needs just one physio session in the evening and uses a nifty inhaler thing for the other sesh), the difference in their lives is staggering.
Another decade or so and they will have cracked a cure I reckon.

Anyway all the best with the ride, and if you do the capital to coast next year I'll come and wave at you - it goes right past my house on the A24!!
Rachel x

ahai1

Let us know what you find out about Alex.

What is the average life span of a CF sufferer?

Let_Robinson_Sing

ahai1 wrote: »

Let us know what you find out about Alex.

What is the average life span of a CF sufferer?

'Average life expectancy is around 31 years, although improvements in treatments mean a baby born today could expect to live for longer.' http://www.cftrust.org.uk/aboutcf/whatiscf/

Some more information about Alex
"But I suspect we'll be seeing more of Alex: he's since been offered a choral scholarship to King's, Cambridge and a place at the Royal Academy of Music. It's hard to conceive of someone having so much potentially ahead of them, alongside the very real possibility of having absolutely nothing at all" http://observer.guardian.co.uk/review/story/0,,2247366,00.html

ahai1

Thanks for the information.

Lynxette

Let Robinson Sing, I wish I had the money to sponsor you!! I had a very dear friend that we lost to CF 5 years ago (Wow, really 5 years ago now!) - Almost to the day, in fact - at the very unfair age of 17.

Well done for doing this! My thoughts are with you and your fiancee.

Let_Robinson_Sing

Lynxette wrote: »

Let Robinson Sing, I wish I had the money to sponsor you!! I had a very dear friend that we lost to CF 5 years ago (Wow, really 5 years ago now!) - Almost to the day, in fact - at the very unfair age of 17.

Well done for doing this! My thoughts are with you and your fiancee.

Thank you. Although you hear of the amazing advances in technology there are still a lot of people who have been unfairly taken away. A few of Sarah's friends from hospital have recently passed away.

All the best with your race for life :T