Lupus Awareness Month (UK)

2268 Views 20 Replies 12 Participants Last post by ladovrehis, Jan 22, 2009

Parkesy

Discussion Starter · Jul 25, 2008

OK so been newly diagnosed with SLE I have decided that because it is soon going to be Lupus Awareness Month I am going to do a fundraiser incorporating my fav. hobby - Kayaking

I plan to kayak down the river trent starting at trent bridge over the weekend and see how far I can travel in that time,

Anyone think this is a good idea?

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Clare.T

· #2 · Jul 26, 2008

Hello Parksy!"
Anything that heightens awareness is a good idea, so long as it's not risking life or limb ! What sort of publicity are you thinking of ? If you kayak with a club or friends you could perhaps even make it a fund raising event. If you join LupusUK they will send you useful publicity material. There is probably a regional LupusUK branch who would be willing to join with you. Having written all that I see you are planning it for this weekend but perhaps it would be more effective when it's planned in advance. Thanks for the reminder of awareness month though

Clare

Surferboy

· #3 · Jul 26, 2008

Let me get me thinking cap on

Parkesy

Discussion Starter · #4 · Jul 26, 2008

1st let me say APOLOGIES!! I am planning it for the 1st weekend in October 2008, it will be a fundraising event & am trying to get alot of BIG local companies to sponsor the event (so far I have my dads company) lol, Im also trying to find out where my nearest Lupus UK ctr is & have notified the Lupus UK charity & they are sending promotional material, Im going to also be advertising in the recorder & also the evening post to bring awareness to a wider range of people,

Clare.T

· #5 · Jul 26, 2008

Good for you !!!!!!! Brilliant effort and clearly well thought out and planned. I'd come but it's a bit of a trek for me. Keep in touch!
By the way there's a scheme for getting donations online anonymously if people so wish but I'll have to find out the addy and all. I think the chap who's planning to do the London Marathon is using it for donations. See his post somewhere on this section.

:hello: Hats off to you!

Clare

greenhaggis

· #6 · Jul 26, 2008

www.justgiving.com is the site most people use to set up to receive money for charity sponsor events!

Lesley

Parkesy

Discussion Starter · #7 · Jul 26, 2008

www.justgiving.com/LupusUKNottm

This is going to be my online fundraising page, I will upload pics of the route etc as soon as I get them sorted, my target atm is £2000

Thank you Clare.T & Greenhaggis for the info. will surely make my fundaraising so much easier :lol:

karen.w.

· #8 · Jul 27, 2008

Good for you parksy!! :highfive: :hug:

I will definitely be sponsoring you! good luck and please keep us updated! :luck:

take care, karen x

birdie

· #9 · Jul 27, 2008

if you can manage it then go! go! go! go!

A fantastic way of bringing awareness

Parkesy

Discussion Starter · #10 · Jul 27, 2008

my thoughts exactly about the awareness, I am currently talking to the evening post to try and get some free advertisement for the fundraiser.

Just to let everyone know as well my old company I used to work for have just donated £200.00 to me for the event, I think I should up the target from £2000.00 lol!:rotfl:

birdie

· #11 · Jul 29, 2008

also talk to your local BBC Radio, I have given several interview on the local BBC radio especially in awareness month and you might also get some more sponsership from it as well.

Parkesy

Discussion Starter · #12 · Jul 29, 2008

yeh thanks alot for that, busy planning away I will have to have a word with BBC Radio & also BBC news

Parkesy

Discussion Starter · #13 · Sep 26, 2008

Been a while

I know been a while on the update front been a nightmare what with work & meds & flares but hey we all suffer!

BBC have agreed in "principle" to do a piece a day on Lupus throughout October in Nottinghamshire to be broadcasted.

Evening Post have agreed to post info. on how my fundraising goes ie. sponsors & fundraising amount.

All set for the big day & am getting really anxious & nervous over it!

Only a few days left until Lupus awareness month

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Lily

· #14 · Sep 27, 2008

That's great Parkesy! :excited:

The extra coverage will help raise awareness. I will be thinking of you and your adventure and wish you big bucks from your effort. :bigsmile:

love
Lily

mogshelluk

· #15 · Sep 27, 2008

Hi Parkesy,
ive just found out about what your doing, ive been trying to see if there was anything going off for lupus next month in Notts, my mum has suffered for about 8-9 years with SLE (not pretty some days) so we will down at the trent to wish you well on the 4th,
Where abouts are you starting from?

michelle

Clare.T

· #16 · Sep 27, 2008

Parksy, that is brilliant ! Good for you.

I'm sorry you have been feeling so unwell. Take good care.
Cheers
Clare

sheira

· #17 · Sep 28, 2008

good on you!!
Im holding an all day event in leeds next weekend at the northern monkey - 10 bands and raffle

marymackay

· #18 · Sep 28, 2008

Lupus Awareness

Hi Parkesy and other posters

your ideas sounds great especially

as you are actioning them- Good luck to you.

I am in northeast Australia and there is no awareness of lupus here. Many on site are aware that I have had to push very hard

to get to specialists far away from my city.

i followed a link from the new Hughes book, that took me to scleroderma- U.S, that took me to Scleroderma Australia, so I paid to join, and they are just setting up online.

I was sent a scleroderma book, :blush:and newsletter on joining, and there was a contact number for someone in my city. To cut a story short, I rang her, she visited me, and I had coffee with her in town last week. I'd known from a friend with Lupus that a group had not kept going, and my scleroderma contact Pat said there was no actual group, but she was aware of those affected.

So we are going to try to contact scleroderma and lupus people by phone or paper insert, just to try to have a cuppa together round Christmas. Pat is a very special

person, as she is a well person, but she has been fundraising for scleroderma for years with raffles, as it is her friend who is so affected.

I applaud anyone like you, Parkesy,

who raises Lupus awareness.

I have been in contact online since start of last year to find out about Lupus/APS etc, finding it a nono subject here. But Pat is the first person I have physically spoken to, and helps not for herself but for others. I hope that she and I might be able to build on our knowledge :wink2: and reach out to awareness

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Christine UK

· #19 · Sep 29, 2008

Just wonderful .....good luck and lets hope teh sunshines x x

birdie

· #20 · Sep 29, 2008

I have been in contact with the local TV stations and all the local papers that are about and waiting to see or hear if any of them are willing to cover lupus for awareness month. Will let you all know the outcome as and when I hear anything

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