WORLD LUPUS DAY 2009
2009 marks the 30th anniversary of The Lupus Association of NSW, and to celebrate we are having an afternoon tea to coincide with World Lupus Day 2009. The birthday celebration will be held at Hook House, 55 Wicks Road North Ryde, on May 8th 2009 from 1pm. We would love it if you could join us for all or part of the afternoon.

The Master of Ceremonies for the afternoon will be Milton Black, an astrologer who makes regular appearances on television and in magazines and who has a family connection to Lupus. Maxime McKew, MP, Member for Bennelong will be presenting awards to members, staff and volunteers who have contributed significantly to The Lupus Association of NSW; and we will hear from people who make a difference to the way the Lupus Association runs.

Help to make our 30th birthday a success


Lupus Awareness Month Patient Education Seminars 

Every year the Lupus association of NSW runs 2 Patient Awareness Seminars to coincide with Lupus Awareness Month: one in Metropolitan Sydney and one in regional NSW. Each year they are held at different locations to make them more accessible to our members and others who are interested in finding out more about Lupus, Sjogrens Syndrome and other Connective Tissue Disorders.

METRO 2009

On Friday 24th October The Lupus Association held its annual Patient Education Seminar at Campbelltown Hospital. The speakers were:
· Professor Connie Katelaris, MBBS PhD FRACP is the Head of Department of Clinical Immunology & Allergy at Campbelltown Hospital, & is a Conjoint Professor of Immunology at the University of Western Sydney.
· Professor Brad Frankum, BMed (Hons) FRACP is the Clinical Dean of the Campbelltown Hospital Clinical School, Consultant Immunologist, & a Professor of Medical Education at the Univeristy of Western Sydney.
· Dr. Karuna Keat, BappSc (Phty) MBBS (Hons) FRACP FRCPA is a Consultant Clinical Immunologist at Campbelltown Hospital, & an Immunopathologist at Laverty Pathology.
· Dr. Frederick Lee, BSc MBBS (Hons I) is a Senior Registrar in Clinical Immunology & Immunopathology, currently working at Campbelltown Hospital.
The topics covered were: 
· An Introduction: What is Lupus & Sjögren’s Syndrome?
Dr. Frederick Lee
· Why do doctors perform blood testing?
Professor Brad Frankum
· Medication use in Lupus – Anti-inflammatories & Immunomodulatory Agents Professor Constance Katelaris
· The BLISS trials and other Monoclonal Antibodies
Dr. Karuna Keat
· Lupus & Pregnancy – Your Questions Answered
Dr. Karuna Keat
Although numbers were not huge, all who attended the seminar learned a great deal and enjoyed the informative, honest and sensitive approach of the speakers. Many thanks to Prof Katelaris for her assistance in putting together this programme.

REGIONAL

The regional seminar was postponed and will now be held on Saturday May 8th at Tweed Heads Hospital. More details will be released later.
Lupus Association of NSW Inc. will again be running the Lupus Awareness Month Patient Education Seminars.
This year’s topics and speakers have yet to be decided. Keep checking this page for further information. 

A Splash of Orange sees Gala Dinner a Success (Saturday May 10th,2008)

The Members Pavillion of the Sydney Cricket Ground hosted the 2008 Lupus Association Gala Dinner, where over 100 people enjoyed the fine food and music of this very special event that raised an estimated $10,000 for lupus research.

Entertainment was superb with Urban Eccentrics playing plenty of great music, throw in a tango dancing lesson and Annette our resident butterfly painter who was painting live for all to see.

The auctions were a great hit with everything from a Bradman signed bat to a SCG Corporate Box going under the hammer.

The speakers were enthralling with Ann Maree Skelton telling the story of her best friend Bronwyn who passed away earlier this year as well as Catherine Vanisi who told her own story of coming to terms with a disease that has impacted not just on her life but also on the lives of two of her three sisters.

Thanks must go to Robyn Spencer of Harmony Events for volunteering her time and effort as well as Judy Rough as Chair of the Gala Dinner Committee. 

Thanks to all of those who volunteered leading up to and on the night itself, and those very generous people and companies that supported us on the night. 

Maxine McKew MP attends World Lupus Day Open House (Friday May 9th,2008)

Maxine McKew MP was in the thick of World Lupus Day at Hook House this year both as a special guest and as the presenter of the annual recognition awards. 

The new member for Bennelong took her role very seriously mingling with members and asking plenty of questions while afternoon tea was served. She then presented all of the staff, volunteers, members and corporate supporters with their awards. 

Highlight of the afternoon was the presentation of:
   Youth Volunteer of the Year to Lauren Hafner and Volunteer of the Year to Toyo Sastro.

Maxine McKew with Award Recipents and Executive Officer Ben Jackson

Losing your Hair over Lupus

Nicole Lucas had a point to prove: Not enough people know about lupus!

On the 4th of March she went about changing that in the only way she thought she could make an impact: She shaved off all of her hair.

Not content just to raise awareness in Orange, which lies past Lithgow and Bathurst in the west of NSW, she made it a fundraising event as well. It turns out that there are plenty of people willing to see Nicole without a full head of hair and she raised over $1200 for the Association.

Well done and thanks Nicole, hope the hair grows fast!

The Long and the Short of Lupus in Orange

John and Linda Hannaford	Debbie and Jennifer from The Commonwealth Carers Association	Patrick Raftery talks feet and lupus

Two people feet apart in stature, share the same enthusiasm for educating people about lupus. 

John and Linda Hannaford are at either end of the height scale but they are an awesome team when putting on an education seminar. Guest speaker Patrick Raftery, a local podiatrist, spoke on good care of your feet and the ramifications for those living with lupus.

Debbie and Jennifer, representatives from the Central West Carer Commonwealth Respite Centre, spoke about the role of carers and the support that carers have available to them. You can get more information from www.commCarelink.health.gov.au. 

The final speaker was the Association’s own Executive Officer who spoke about lupus, the Association and the benefits of being a member. There were plenty of questions from the nearly 50 participants, who enjoyed the Ex-Services Club’s generosity in supplying the facilities for the seminar.

Buy a ticket to this year’s quilt raffle being run for us by The Eastwood Patchwork Quilters. First prize is an elegant quilt and there is also a 2nd and 3rd prize. For information or to purchase tickets contact Angela at the Association (tel: 02 9878 6055). Cost is $20 for a book of 10. 

The prize will be drawn on May 8th 2009 at our birthday celebration.