Scleroderma Association of NSW
|
Scleroderma Association of NSW
|
The Scleroderma Association of NSW Inc.
cannot offer direct advice on treatment or available therapies.
It is up to each patient to make all relevant health decisions
In consultation with their own doctor or health professional.
|
•
|
||||||||||||||||||||||||||
|
Our membership fees are $23.00 per year and entitles members to our extensive information and four newsletters per year. Download membership form here: rtf or pdf Please print them, then fill in and post to:
P0 Box 227 ASHFIELD NSW 1800 Tel. 02 9798 7351 Fax. 02 9798 7985 Donations Tax deductible donations to the Association's Research Fund can be made by forwarding a cheque to: Donations of $2 or more are Tax deductible.
|
The Scleroderma Association Of NSW inc. was established in 1979. The Association's aim is to provide support and information to people with scleroderma, their carers, and interested professionals by offering:
All of the Association's work is carried out on a voluntary basis by members. We are a registered charity that was formed in 1979 by a few dedicated scleroderma sufferers, one of whom received the Order of Australia Medal for her volunteer work and untiring dedication, before retiring four years ago. We are strongly committed to research and conduct many fundraising events to assist Australian research. We maintain an office in 15, 6-8 Holden Street, Ashfield (Sydney) run by three unpaid volunteers recruited from our membership. The office is open 10.00 a.m. to. 3.00 p.m. Monday to Friday and an answering machine collects messages after hours. The membership is $23.00 per year and entitles members to our extensive information and four newsletters per year. Our office staff answers all manner of phone queries and counsel callers. We call regular office meetings to advise volunteers how to handle these queries and involve them in the running of the office. Letters are answered, information is sent out, newsletters sorted and posted to our members. We have trained many of our staff to be computer literate and through our efforts we have managed to raise donations to computerise our office. A Management Committee of nine volunteer members with scleroderma is appointed at our AGM. We also have a medical panel who give generously and freely of their time. We meet with them once a year to report progress and obtain advice. They also act as speakers at seminars, which we sponsor, the last of which was attended by over 100 people from all over New South Wales and other Australian states.
We have no government funding at the State or Commonwealth level but receive an amount to help publish our newsletters from the Sydney Southwest Area Health. (SWSAHS). A monthly support group meeting is held at the RSL Club in George Street; Sydney hosted by the Committee and is open to all people with scleroderma and their carers. It is held on the 4th Saturday of the month and starts at 1.30pm. Relatives and friends are also welcome. The impact on the local community can be measured by the constant attendance when sufferers tell us we had literally saved their lives. We also hold Scleroderma Awareness Week in February when volunteers and members hand out our pamphlets in shopping centres, malls, and other public venues, have guest spots on radio and television, and also have feature articles published in newspapers and magazines. Medical Advisory Panel consists of
The office at 15, 6-8 Holden Street, Ashfield (Sydney), is run entirely by volunteers who all have some form of scleroderma - several travel from as far away as Wollongong and the Blue Mountains. Although the office is officially open from 10.00am to 3.00pm, volunteers regularly work from 8.00am to 6.00pm and are in constant phone and fax contact with each other. The staff are covered by insurance and are reimbursed travel expenses if required. We treasure their efforts and have recently awarded life memberships in recognition of work done, as well as giving small individual gifts at Christmas. Together they make a great team. Donations Tax deductible donations to the Association's Research Fund can be made by forwarding a cheque or money order to: Street address is Suite 15, 6-8 Holden Street ASHFIELD NSW 2131
Postal Address P0 Box 227 ASHFIELD NSW 1800 Donations of $2 or more are Tax deductible. Volunteer Involvement in the Project Volunteers have given their time to raising money for our informative pamphlets. They have been instrumental in raising money from pharmaceutical companies to sponsor these pamphlets, which are requested by our ever-growing membership numbers. The information for these pamphlets (at present there are five, covering all aspects of the disease) is constantly sought from our medical panel after meetings and consultations with our volunteers. It is written by medical panel members and printed in pamphlet form. View covers and overviews here:->
|
2008 Randomised trials underway, of drugs to treat pulmonary arterial hypertension associated with scleroderma. E nrolments will be limited to those already on sildenafil or iloprost.
Anne Keogh P: 61 2 8382 2641 Email: amkeogh@stvincents.com.au
|
||||||||||||||||||||||||
The Scleroderma Association of NSW Inc.
cannot offer direct advice on treatment or available therapies.
It is up to each patient to make all relevant health decisions
In consultation with their own doctor or health professional.
•
|
||||||||||||||||||||||||||
Updated Updated Monday, 03. November 2008
"Laughter
is the shortest distance between two people." Victor Borge
If there are any broken links
please contact the
web
administrator
Her
Excellency Prof. Marie Bashir has graciously agreed to become our Patron.
