Upcoming Events

Events being hosted and/or support by the Lupus Association of NSW will be advised as they are confirmed. Please check back regularly. If you would like to notify us of an event that is happening to raise awareness and assist fundraising for the Lupus Association of New South Wales, then please email info@lupusnsw.org.au.

City 2 Surf - Sunday, 8 August 2010

The well known fundraising event City 2 Surf is being run once again this year (pardon the pun!). On Sunday, 8 August 2010, thousands of participants will join the City 2 Surf fun run and tred 14km from Sydney CBD to Bondi Beach in an effort to raise funds for their nominated charities.

Lupus Association of NSW is lucky enough to be one of those nominated charities for a few of our loyal supporters and with the likes of people such as Andrew Thirlwell we are already on the way to raising some much needed funds. Andrew has set himself a target of $2,500 and since setting up his Everyday Hero fundraising page in support of the Lupus Association, he has already reached a whopping $2,400! Way to go Andrew and thanks to all of those generous souls who have donated through Andrew's efforts.

For those of you who are keen to don your joggers and move a bit of that sneaky winter-weight, while at the same time raising money to enable the Lupus Association of NSW to continue providing this necessary service for those affected by lupus, please visit The Lupus Butterflies fundraising page where you can become part of the team and register for the City 2 Surf yourself, or simply show your support with a donation to the team.

Register to run (or walk) in the City 2 Surf 2010

Donate to The Lupus Butterflies City 2 Surf 2010 team

This event is always huge fun for The Lupus Butterflies, whether you are a serious competitor who runs the 14km or even if you are a more, shall we say, social competitor who would prefer to stroll the 14km course. Entrants supporting the Lupus Association of NSW in City 2 Surf 2010 will receive a lupus t-shirt to wear on the day and to keep after the event. There will also be a barbeque for lupus supporters at the end of the course with time for photos (and recovery!). Last year's entrants had a ball ...

Pictured above: Entrants in The Lupus Butterflies team for the City 2 Surf 2009

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Recent Events

Erin-Louise Povey has been steadily making the journey from Brisbane to Sydney in the fight against lupus since 9 May 2010. If you haven't already been following the journey, catch up with the Bridge to Bridge website.Many Australians affected by lupus have joined Erin-Louise along the way to walk some distance with her or just to stop and chat about how relieved they are that someone is getting the word 'lupus' out into the public vocabulary.

At last, Erin-Louise is due to complete her journey when she crosses the Sydney Harbour Bridge (South to North) on Sunday 13th June, 2010!! Anyone who would like to join in the celebrations should congregate on the eastern side of the southern pylon by 11.45am, at the foot of the stairs in Cumberland Street.  There will then be a crossing of the Sydney Harbour Bridge meeting up in Bradfield Park NORTH SYDNEY for a formal welcome for Erin-Louise.

Rotary pitching in with a BBQ in Bradfield Park to mark the occasion!

The Rotary Club are running a BBQ in Bradfield Park and there will be discounted vouchers for Luna Park and other give-aways to mark the end of this momentous journey.

World Lupus Day 2010

As usual, the Lupus Association of NSW was involved in planning and hosting a number of activities and events around the state to mark World Lupus Day - May 10, 2010. We held two Patient Education Seminars - one in Westmead and one in Tweed Heads in the far north of the state. We have received very positive feedback from both events that the doctors and speakers were very approachable, easy to understand and provided relevant information. You can stay informed of upcoming events by subscribing to our quarterly newsletter.

Lupus Awareness Month Patient Education Seminars 

Every year the Lupus association of NSW runs two 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.

Westmead Community Forum

Coinciding directly with World Lupus Day, the "Westmead Community Forum - What's New in Lupus?" was held at Westmead Hospital on Monday, 10 May 2010 from 6-8.30pm. Rather than being run as a typical patient education seminar, this event operated as a forum. Guests were able to pose their own questions to our panel of experts from the newly established Westmead Hospital Lupus Clinic. The forum was chaired by Professor Graeme Stewart and the panel consisted of the following professionals:

• Associate Professor Nick Manolios - Rheumatologist
• Associate Professor Pablo Fernandez-Penas - Dermatologist
• Dr Richard Phoon - Renal Physician (Kidney Specialist)
• Professor Brian Trudinger - Obstetrics & Gynaecology
• Mrs Therese Burke - Clinical Nurse Consultant & Lupus Clinic Co-Ordinator
• Dr Ming-Wei Lin - Immunologist

This time, just ahead of World Lupus Day, the "Tweed Heads Patient Education Seminar" was held at Tweed Ultima Conference Centre on Saturday, 8 May 2010 from 10am - 3pm. The following professionals spoke to a small audience:

• Associate Professor David Kandiah - Dept of Rheumatology & Medicine, Royal Brisbane Hospital : Lupus and Pregnancy
• Dr Damon Langguth - Immunopathologist : Recent developments in the medical treatment of lupus
• Dr Julien De Jager - Rheumatologist : Medication use in lupus
• Matthew Cook - Director of Immunology, Canberra Hospital : The ApoSLE Project

Bronwyn Otto Memorial Dinner, Harold Park Paceway - 13 November 2009

Many thanks go to Ann Marie Skelton, who with help from her family and friends, organized the Bronwyn Otto Memorial Dinner to honour the memory of her dear friend Bronwyn who died far too young as a result of Lupus.

Bronwyn’s niece Chantelle spoke movingly of Bronwyn, her life and her struggle with Lupus. Judy Rough spoke about the Lupus Association of NSW and its work, and HSC student Hannah McVicar spoke about her experience of learning to live with Lupus as a high school student. As part of her HSC project Hannah did a survey about the effect of Lupus on the family.  People who attended the function were visibly affected by the stories of both Hannah and Bronwyn.

Lynne McGranger from Home and Away was our special guest and generously gave of her time speaking to guests at the dinner. She drew the winners of the raffles, as well as securing a few auction items herself.  The dinner was an opportunity to raise awareness and to raise funds for the Lupus Association of NSW as we celebrated the life of Bronwyn. Everyone who attended would agree it was a great success.

Lynne McGranger from Home & Away (above centre) supported lupus at the Bronwyn Otto Memorial Dinner

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Support Group Meetings

Support Group Meetings are meetings for anyone living with lupus/Sjogren's syndrome and their family and friends. It is an opportunity for you and your family and friends to share their experiences in how they are living with lupus and the impact of lupus on their lives. You do not have to be a member of the Lupus Association to come to Support Group Meetings.

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Lupus Awareness Month

Events will be announced as they are confirmed.

Lupus Links - Members Newsletter

Lupus Links is our quarterly newsletter for Lupus Association of NSW members. Click here to download an archive edition of the Lupus Links Newsletter.

In The Loop - Members Newsletter for Young Adults

"In the Loop" accompanies Lupus Links each quarter and is written and edited by our volunteer, Kelly Davidson. In the Loop is targeted towards young adults aged beween 18 and 30 years. Click here to download an archive edition of in The Loop.

If you are a young adult who would like to make a contribution to In the Loop by writing or suggesting an article or topic, then please contact the Lupus Association and they can put you in touch with Kelly directly.

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Past Lupus Events

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. Also, 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 (pictured above) had a point to prove: Not enough people know about lupus! On the 4th of March 2009 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.