GO DIRECTLY TO FORUM BY CLICKING HERE

This is the temporary home page of the new site offering mutual support for anyone with an interest in lupus or any auto-immune disorder. To date, there have been several hundred hours invested in creating a "one stop shop" for all things to do with lupus or indeed, any immune disorders. This work is just hours away from going live. In the meantime, there is a section on www.pituitarychat.com set aside for people with an interest in lupus or other auto-immune disorders. As there is now a recognised link between pituitary conditions and auto-immune disorders, you may find that a lot of the information provided on pituitarychat.com/forum is relevant to you. In fact, the similarities from symptoms to common treatments are uncanny. You will find a warm welcome there where the existing members are expecting you and will ensure you find the forum a soft place to land in times of need.

Please note that unless otherwise stated, the information is provided by fellow patients who are not qualified to offer medical advice but are more than willing to offer advice and support based on their own experiences.

Due to the nature of this illness, this family d isease means that a lot of affected families find themselves suffering financial hardship and at no stage will any member be asked for money. It is free to be a member - no catch.
The site will be run by users for users and any decisions of consequence will be made by YOU, the members through the use of on-line polls.

Unfortunately, due to the inexplicable reasons for removing such a useful service from its members by The Irish Lupus Support Group Limited with whom we have no affiliation, my hand has been forced o go live with this site before it was ready. The reason for launching this site before it was complete was primarily to ensure that an established community will be kept together. Due to the fact that the facility was removed by The Irish Lupus Support Group Limited without notice resulted in emotional hardship for many members who saw the on-line forum as a lifeline. We anticipate that the forum will go live within the next few hours and all the public and private messages that have previously been published will be retained along with your existing membership and profile. While the site is called IrishLupusSupportGroup.com, you do not need to be Irish to avail of the many benefits of membership. There will be domain aliases such as auto-immune-support.com which will point to the same site.
Apart from providing extensive and up to date information, we will also have a forum which you will find useful, wherever you happen to be on your journey through lupus.

Should anyone require a POP3 email address - yourname@irishlupussupportgroup.com - this will be provided free of charge. Any information sent to info@:irishlupussupportgroup.com will be treated with the strictest of confidence. You can also communicate through confidential@irishlupussupportgroup.com.

At this very early stage, two things are important. Firstly, getting the word around that we exist. Secondly, if anyone would like to help run this charity at any level, I would love to hear from you. Please send an email to info@irishlupussupportgroup.com stating any particular interests or skills you may have to offer, and the amount of time you can reasonably spare. Please don’t assume that someone else will do it, your input would be greatly appreciated, especially at this early stage.

It is my intention to provide every member with a free starter pack which will include a membership card, six leaflets designed to be put on doctor room notice boards, some tablet tracking software, a leaflet explaining this charity, a car bumper sticker, some business (charity) cards and another couple of items that escape me at present! There will be no charge for this pack however, it will mean that you will need to provide an address so that we can ship it to you. It will also help identify any clusters of this disease if they exist. Your personal details will not be shared with any third party however, certain details like gender / location / etc. may be provided generically for the furtherance of research into lupus and auto-immune disorders.

I would advise that you check this site regularly as there will be hourly changes made over the next week or so. Should anyone wish to donate money, or better still, know of any corporation that would like to get involved as a sponsor, they will be offered a very worthwhile deal and can pay directly into the bank account for a similar organisation - Pituitary Chat. (www.pituitarychat.com/forum). The details are as follows:

ULSTER BANK
BALLYHAUNIS / KILKELLY BRANCH
ABBEY STREET
BALLYHAUNIS
CO. MAYO
IRELAND
SORT CODE: 98-52-70
ACCOUNT NUMBER: 10244932

Otherwise, cheques. postal orders can be sent to:

PAUL CLARKE - CARE OF
AUTO-IMMUNE-SUPPORT.COM
KILKELLY
CO. MAYO
REPUBLIC OF IRELAND

(Please note that while we are setting up a bank account, that all cheques should be made payable to Pituitary Chat and a note stating that the donation is intended for the lupus support group as distinct from Pituitary Chat.)

This not for profit organisation is run by me personally. As I am also a patient with lupus, Addison’s disease and a pituitary tumour, both financial and physical energy resources are severely restricted and any assistance, no matter how small will be of great benefit, especially at this early stage. Any amount no matter how small would be most graciously accepted and will make a difference. There will shortly be a dedicated account open for The on-line Irish Lupus Support Group. Or auto-immune-support.com. In the meantime, please ensure that you mark clearly that the donation is to go to the lupus support group rather than Pituitary Chat. All money received will generate a receipt and all accounts will be published. Overheads are minimal being the cost of stamps / ink / domain name registration and hosting / etc. and any amount in excess of €100 spent will first need the approval of members through polls. Accounts for petty cash will also be published so every penny will be publically accounted for. Please bear in mind that I will need an address in order to issue a receipt.

Once we are up and running, there will be a free election to decide on who will manage the charity, and who will manage the manager. This charity belongs to YOU. Never forget that. It is the job of management to facilitate the members’ wishes to the best of their ability.

I would like to thank you in advance for your patients while I iron out teething problems. I anticipate that this will take a week or so.

To see the current constitution, CLICK HERE!

Any changes to the constitution will need a vote amongst the members. This is designed to secure this service for the members and ensure that it is always run in the best interest of YOU - the members.

Thank you for your support and patience and I would particularly like to use this opportunity to thank those kind people who have offered me messages of support.

Sincerely,

Paul Clarke