Welcome to The Lupus Group of WA website

News - March 2006

• From the Chair
• Manager's report
• News snippets
• Fundraising
• Donations received
• Membership news
• Library
• New information sheet(s)

From the Chair

Well, another Christmas and New Year has come and gone and it is time for another Newsletter. I hope you all had a lovely festive season and that the new year brings you happiness and good health.
When I joined the Lupus Group it was not a certainty that the Group would be financially viable in 2006. I am pleased to say that our erstwhile treasurer informs me that at this point in time, our books continue to be in the black. That state of affairs is in no small measure due to the efforts of Gretchen and the usual band of supporters who help out on a regular basis.
As an organisation, our first priority is to endeavour to maintain the current level of help we can offer members. Second to that, we are trying to raise sufficient funds to enable us to increase services. We have a few plans in the pipeline which we are working up as a committee and which we hope will result in interesting fund-raising and awareness raising initiatives.
I was married over the Christmas break and I confess that the Lupus Group was not at the forefront of my mind in December. However, I am now refocussed both at work and in my role as the Chair of the Lupus Group and I look forward to working with you all again this year to ensure that the Group continues to respond to and to meet the needs of its members.
Please feel free to contact me ( or any other member of the Committee ) should you have any queries or suggestions.
It would be terrific if more of you could put your hand up to help with our fundraising so that we don't always have to rely on the same core group of people this year. Some of the things you could do to support our efforts are as simple as organising a group to come along to the organised movies or ordering wine through Ultimo Liquor and Catering.
I feel like a broken record making the usual plea for support but it bears repeating. You have to help us to help you.
Special thanks to the ANZ Bank and to the Stan Perron Charitable Trust. The ANZ have a valued employee who has lupus and wanted to offer her support by contributing to the Lupus Group. One of Mr Perron's employees was recently touched by a talk Gretchen gave to a Rotary Club about lupus and the work of the Lupus Group. As a result he approached Mr Perron on our behalf and the Stan Perron Charitable Trust donated $2000. Thanks also to West-Net who continue to host our website at no cost.

Kate

Manager's report

A happy, healthy 2006 to all our supporters. I hope your Christmas was all that you expected and 2006 has been a good year so far.
I am pleased to say we have already started in a positive vein with three fundraising events happening by the end of March. We have also been lucky to receive a $5500 grant from Carers WA to conduct our seminars in 2006.
The year started well with a surprise contact re a new research project awarded to the WA Institute of Medical Research to research a genetic link with lupus. We need to support this - research such as this will help to detect and discover better treatments and it may encourage the researchers to do more research!
In relation to the research it is believed that lupus does affect family members. We have a number of cases known to our Group where family members have lupus. It would be wonderful to be able to understand this genetic link as finding genetic links can assist with better treatment options etc. This then may have ramifications for all lupus patients.
Please support our fundraising events in 2006 - we are now starting to make a difference with our ongoing fundraising efforts, but we need your support.
Many, many thanks to the Rotary Club of Northbridge for their fantastic donation of $1000 - we really appreciate their support. The Perron Charitable Trust also donated $2000 which was really generous and very much appreciated.
If you have any ideas re fundraising please talk to me.
Stay well !

Gretchen

News Snippets

Country Support Network

We are keen to see some regional meetings offered to assist those in country areas to keep in touch with other Lupus patients. If you are a Lupus patient or family member in a country area and would be happy to be a contact person for other Lupus patients in your area, please ring and leave a message as we would like to give this a trial in 2006.

Free Carer Workshops

8 March 2006	Looking After Yourself Minus the Guilt
5 April 2006	Relationships, Maintaining the Balance
10 May 2006	Short Breaks for Carers
24 May 2006	Everybody's Talking but Nobody's Listening
17 June 2006	Safety At Home
21 June 2006	Exploring Loss and Grief in the Caring Journey

For further details please contact :
Carers WA, 255 Walcott Street, North Perth WA 6006     phone : (08) 9444 5922     fax : (08) 9444 8966
free call : 1800 242 636     email : carers@carerswa.asn.au     website : www.carerswa.asn.au

Request

I was wondering if you would be able to give me the contact details of a few people with lupus or Sjogrens who wouldn't mind telling the story of their journey with their illness. We are in the process of writing a book, and the author feels that she needs to include the other states as well as NSW. We hope to launch this book in June so it's pretty exciting !
Best wishes   Karen Aubrey, Executive Officer, The Lupus Association of NSW Inc
free call : 1800 802 088     phone : (02) 9878 6055     fax : (02) 9878 6049
mobile : 041 041 8611     email : karen@lupusnsw.org.au     website : www.lupusnsw.org.au

Research - Unlocking the Genetic Mysteries of Lupus

Australian lupus sufferers are being sought to help a Perth scientist's quest to unravel the mystery causes of the chronic and potentially fatal autoimmune disease. Dr Daniela Ulgiati, from the Western Australian Institute of Medical Research and UWA's School of Biomedical, Biomolecular and Chemical Sciences, is teaming up with US researchers in Colorado and Los Angeles in a bid to pinpoint the genetic causes of lupus. The two-year project, which has been funded with a grant from the New York-based Alliance for Lupus Research, could lead to better treatments for the more than 20,000 Australians affected by the disease.
While its understood that lupus is caused by the body's immune system attacking healthy tissue, what triggers that reaction remains unknown. "As well as an environmental component, we know that there is a very strong genetic component to lupus, with several genes already found likely to be linked to the disease" said Dr Ulgiati. "Recently it's been discovered that another gene called CR2, may play a role in the development of lupus and it's that gene that our new project will be directly investigating."
Lupus causes inflammation in the body that can cause pain, as well as damage the function and structure of organs including the kidney, heart, brain and lungs. "CR2 is part of a very important pathway within the human immune system that helps our bodies generate an efficient response to protect us from bacteria, viruses and other foreign materials" said Dr Ulgiati. "Sometimes there's a disruption to that process and the body starts to attack its own tissues and cells, leading to lupus development - what we're investigating is if abnormal changes in the function or expression of CR2 might be linked to that disruption. The big hope for the project of course is that if the gene is found to be a cause of lupus, it could be possible to create new drugs and therapies that target that gene."
People with lupus wanting to volunteer for the study are asked to call (08) 9224 0333 or email daniela.ulgiati@uwa.edu.au. Only 2 visits and 2 blood tests are necessary to assist in the effort to find a gene that may influence the development of Lupus. For more information ring Gretchen on 0417 973 077.

Office Volunteers

Have you one or two hours to spare ? We still need a volunteer in the office either regularly or only when we are busy - whatever best suits you.
Ring Gretchen on 0417 973 077 or the office on 9224 3144 - leave a message and Gretchen will ring you to discuss what time you may have available.
A big "THANK YOU" to our great team of office volunteers : Norma Wednesday & Gaye Friday.

Computer

Many thanks to Andrew for his continued support whenever we have a technical problem.

Fundraising

Film Afternoons

Our first film fundraiser was a great afternoon's entertainment but unfortunately we had a small attendance - so let us make the next one a good one.
Our next film fundraiser is "March of the Penguins" on Sunday 30 April at 1.30 pm in the Cygnet Theatre.
We need members to support these events - bring friends and make it a fun afternoon.
"The Da Vinci Code" will screen at the Cygnet on Sunday 28 May at 1.30 pm as a fundraiser for us - so PLEASE tell all your friends so we have this as a major fundraiser for the year. A lot of people will want to see this film so we need to tell them IN ADVANCE so WE benefit - not the big film companies !

Quiz Night

Our annual Quiz night will be in the first half of the year.
If you have any items that could be used as prizes then please drop them off or let Gretchen know so that pick-up can be arranged.

Candy Machines

In response to previous requests for fundraising ideas, we have been given a great opportunity. We have been offered a percentage of sales from these Candy Machines. If your business or place of work has a small area to set one up then please let us know. ( Example: bank or office foyer, retail shop, workplace cafeteria )
There is no cost to you, the business or the group. Best of all, no work is involved. Proceeds through the generosity of one of our members. A great idea as the Lupus Group could use the regular income !
Please ring Café 20 29448 0458 to register your interest.

Donations received

Membership news

MEMBERSHIP RENEWAL
There are still a number of members who have not renewed their membership. Please ring if you need another renewal form or if you are not sure if you've paid.
Our membership fee provides valuable funds - the more members we have the better. In fact, we should promote the Lupus Group amongst our friends and relatives as this raises our support and interest base, and increases awareness.

Library

• Members can borrow two items at a time.
• Loan period is three weeks - items may be returned by post or by dropping them off in our letter deposit in the corridor if the office is unattended.
• Lost or damaged books will have to be paid for.

New information sheet(s)

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The Lupus Group of WA (Inc) does not recommend or endorse any products, drugs, treatments, procedures, medical or health professional on this website. We suggest you discuss this information with your doctor or specialist.