Norma and I have decided we have reached our use by date. Norma has been working as a volunteer for The Group for .... and feels it is time to move on. I have been both Chairman and or manager for the past five years. This last year has been hard for because of regular flares, so it is time to leave.
We need new volunteers. Anyone interested should contact me on david@lupuswa.com.au. We did send a newsletter out to our members announcing this but so far no response.
New Position
There is a position for a sales and marketing person to act as manager, raise funds and promote The Group, that would pay a retainer and commission on funds raised. Interested persons should apply in writting to: The Board, The Lupus Group of WA (Inc), Royal Perth Hospital C/o GPO Box X2213 PERTH WA 6847
The education module designed by an advisory panel of doctors and the medical writers of Genesis ED, will be available to general practitioners to help in diagnosis and management of the illness. The aim is to reduce the time taken to achieve a diagnosis for lupus.
The on- line module was funded by The Lupus Association of NSW.
One of the new wonder medications we have been hearing about "Belimumab" is to be considered for a licence to manufacture in the UK.
Belimumab is one of many "mab" medications being trialled in USA, Germany and the UK. Others are Rituximab USA and Infleximab which has been used in Australia for lupus patients who have extreme life threatening flares or infections. It is extremely expensive (tens of thousands of dollars) and so is use sparingly.
Although there is a long way to go, there is a light on the horizon. We will keep you up to date.
Morning Teas4Lupus.
We have changed the Lupus awareness Month to May to tie in with the UK and NSW. So we invite our members to consider having a morning tea to raise funds for our group. Just invite a few friends over for a fund raising morning tea and have some fun. One group picked up a few donated gifts from local shops and auctioned them off as a fun thing. Use your imagination to make the event a happy morning. Donated funds are receipted.
Maybe you could ask your local branch of The Red Hat Ladies, Probus, Rotary or church group if they were interested in helping to organise a morning or afternoon tea to raise funds for The Lupus Group of WA.
Put your thinking caps on and let me know if you need any pamphlets etc.
Check new events on the "Whats On" page.
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, teamed 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."
The results will be published when the investigation findings are completed
The Lupus Group of WA depends on your good will and generosity. Please remember that all donations of $2 and over are tax deductible.
"lupus Intus" by Suzanne Ferschi
We received a copy of this book from the author recently. The book is autobiographical and is written in two parts. The first part is the story of Suzanne's journey from the first symptons of lupus through to 2008. The second part is about her hospitalisation and is in chronological order from1986 to 2008. This is a very graphic story, but is worth reading, although it must be remembered that only a very small number of lupus patients go through such such a hard time a have as many symptoms as Suzanne.
The book can be bought from Suzanne. Her email address is suzanne@lupusintus.com.au
We have produced a DVD of the Q&A meeting held on Saturday 18th of June featuring immunologist Dr Michaela Lucas, research doctor Dr Daniela Ugliati, nephrologist/renal specialist Dr Neil Boudville and GP Dr Jean Foster. Although you can see and hear everything they said, the camera is static and just off frame a bit.
Copies are $15.00 each plus $2.50 poatage and packing. We also still have a few copies of Dr Kevin Murray's talk on lupus enmphasising juvenile lupus at the same price. to order either phone 92243144 or email admin@lupuswa.com.au with your credit card details.
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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.
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