Lupus party. Raising awareness and funds for lupus uk

[lupienat]

Hi all, this is an open invitation to you all and your friends and family. A close friend of mine is organising an awareness and fundraising eve. For all the family, childrens activities and bar and band later on. Tickets will go on sale next week. Waiting for my friend to do sums prob about 10.00 each. There will be a buffet too. Also we are thinking of getting a speaker or a few of us to do a little talk on living with lupus. May try and include a short lupus quiz. Just to make sure everyone leaves with some really good knowledge. All proceeds go to lupus UK. The date is may 4th 2013. Venue Jennets park community centre, Bracknell. Prob from 6 till whenever you have had enough. Will confirm ticket price and time in next few days. Interested let me know, your support will be greatly appreciated xxxxxx

[MandieR]

wow that sounds like a great idea. Its a fair way for me to travel but as long as I can get someone in to care for my Dad then my partner and I will come along x

[lupienat in reply to MandieR]

Thankyou so much. Will be very grateful. I understand how difficult it will be for you to travel, make arrangements for your dad, thank you for considering coming at this stage. Will be great to meet you and put faces to names and have a chat xxxx

[Paul_Howard Partner LUPUS UK]

Please let us know if you need any publicity material or any of our literature. I'll be happy to help out how I can.

[lupienat in reply to Paul_Howard]

Hi Paul, thank you. We have been in touch with lupus UK and have some materials and also a letter asking local retailers if they will be able to donate items so we have a good raffle prizes. If i find out what we have already i will come back to you if we need anymore. Is there a local lupus group near reading area that we could contact? Also can is there enough time to put event into lupus magazine at all? thanks Paul, for your support xxx

[Paul_Howard Partner LUPUS UK in reply to lupienat]

Hi,

The Thames Valley group is around that area at the moment, but they will be disbanding very soon due to lack of interest and support. You can contact them through the website though to see if they can help - thamesvalleylupus.org.uk/

Generally we aren't able to promote upcoming events in our magazine because of the volume of requests. However, I would be happy to share details on the LUPUS UK Facebook page and twitter account if you let me have all the details for the events and a contact email address.

[lupienat in reply to Paul_Howard]

Hi Paul, oh ok thank you. Might do that then x

[Stacy2310]

Hi

I live in Woodley reading, I would really be interested in coming. I really want to try and meet some local people with lupus xx

[lupienat in reply to Stacy2310]

Excellent news, will be a great way of meeting others who suffer too. At the sane time as raising funds and awareness for lupus. A little lupus get together, will be great to see you there. Will be posting any additional info here soon. Thank you for your support xxx

[Tigerlily4]

What a fantastic idea! Sadly too far for me to attend but wish you all the best for a super evening :)))

[lupienat in reply to Tigerlily4]

Ahhh thank you, should be great. Sorry you can't make it, thank you for your kind words xxx

[helentad]

Sounds great but as I live in North Wales I will not be able to attend. May I take the opportunity to wish you every luck and best wishes for the event.

[lupienat in reply to helentad]

Ahhh that's a shame, I understand totally. Thank you for your kind words xxx

[hollyhock]

Great idea would love to come if we were closer (west somerset) Ironically used to live near Reading. I don't know anyone who lives near me, it would be a good idea to try locally here too, we do need to spread info about Lupus asmost people have never heard of it, or if they have they do not know anything about it.

Good luck and will be thinking of you on the day, hope it's brilliant xx

[lupienat in reply to hollyhock]

Hi holly, I understand. I live in north Somerset. My friend who is organising it is the one who lives near reading. As she didnt want me to have to do anything or stress she decided to do it near there. We are gonna stay overnight in a premier inn so as not too much travelling. yes defo need some awareness for lupus. And funding for treatment. I know its hard for us guys to travel, but also tricky when trying to organise an event as we all live in different parts of UK. However if you would like to meet we could try and arrange something. Would be great. Its always good to talk to others who actually feel the same. Let me know what you think. Thank you for your support xxx

[bam1993]

Hi I have just been diagnosed with Lupus (Rhuemy say everything is pointing to that......after years of the Dr's telling me I have Fibromyalgia, they just kept upping the dose of Gabapentin and they were making me physically sick....sometimes upto 5 times a day!! I would love to come to this night, I live in Enfield so don't think that Bracknell is too far. I need to learn as much as I can about it, if any of you have read any good books on it, or leaflets etc., please let me know.xx

[Paul_Howard Partner LUPUS UK in reply to bam1993]

Hi Barn1993,

If you send me a private message or email [e-mail] with your name and address I'd be happy to send you one of our free information packs.

[lupienat in reply to Paul_Howard]

Hi Paul ok will send email later on today. (will set reminder un phone) thank you xxx

[bam1993 in reply to Paul_Howard]

Hello Paul.... Thank you for your reply,my name on the site is Bam1993! I saw your reply by scrolling down. I need to learn as much as I can about Lupus so the info pack will be great- and so nice that we can have a place to talk/discuss with other sufferers! My real name is Julie-but I knew that would be taken, so went with an old nickname-will e-mail you my address for the info pack.

[lupienat in reply to bam1993]

Hi, thank for your reply and support. Will be great to meet and see you there. Unfortunately I have heard of the same scenario about diagnosis many times. I myself had to go through it. Which is why we all need to support each other and spread the word together. We are going to have an information table available. Great idea about books etc. I have read some good books but will source some more info too. I am hoping it will be very valueable and enjoyable event. We are hoping to also do a short lupus quiz. so as everyone can learn at least one FACT about lupus. Enfield isn't too far. Tickets will be available soon. Will be forwarding more info as soon as I get it. Thank you again for your support, I hope your sickness improves very soon. Are you on any other meds? We are all here to support you at any time. Take care and be kind to yourself xxxx

[Hidden]

Hi,

Great idea, I'm in Guildford so I can come and will rally as many people as I can so confirm details with me asap. It'll definitely be me and my two children, 7 & 11, who desperately need to meet children of lupus sufferers - even they label me as lazy, as fatigue is a big problem for me. My 11 year old also went on a young carers trip and came back upset as she was the only one there whose parent was ill, bless her, and the others were sort of shocked when she told them it was me. Xxx

[lupienat in reply to Hidden]

Hi, excellent so glad you and your children can come. Will be fab if U can encourage others to come. Tickets will be avail le soon. I will post more info as soon as I get it confirmed. Will be great to meet and chat. Arr it is hard for our children to understand. Its hard for adults to understand lupus let alone young children. Bless you though. I have three children so I know how hard it is to be a parent as well ad feeling so unwell. I too suffer with fatigue badly. Children always have so much energy and its very difficult to balance that. Do you have any family or friends who understand and help you. Sometimes we just need to know others are there even to help with kids for a few hours. Can make such a difference to Getting through the day. my children are in school, so manage to rest while in school. Its the holidays that always cause exhaustion. The half term last week by day two I was literally in so much pain and fatigue I cried for someone to help me. Certainly some further thoughts of helping us lupies can come from us meeting up. So grateful for your support. Can't wait to meet you and your children. Take care post info asap xxx

[Hidden in reply to lupienat]

I'm Julie btw. Will be great to meet you. Just thought, Guildford comes under the Hampshire Lupus UK group led by Tina Stemp, I think. ask Paul for her details. Get me 2 posters and I'll put them up on the doctors and hospital noticeboard by my rheumy. I'll do anything I can to help. Xx

[sassylisa]

Bracknell is unfortunately a very long way for me-living in Coventry. Unfortunately can no longer drive, as I was diagnosed with a Primary CNS Lymphomatic brain tumour in Aug 2011, and have had driving license revoked due to occasional seizures. So I would not be able to attend this