For updates and news of upcoming events:
Please see below or check our
CURRENT EVENTS page for details.
The Scleroderma Association of NSW Inc. is a charitable organisation whose aim is to increase support and awareness for those afflicted with Scleroderma in the NSW Community. Please click on ABOUT in the menu bar for more information on this chronic illness,
or connect with us through our upcoming events, support group meetings or our Contact Us page.
What's News:
Coronavirus COVID-19 A message from our president can be found on this page. Please take the time to read it as it contains important information about our upcoming events.
The guys from 500 Thousand Steps for Scleroderma are at it again! Details on this page.
We recently celebrated our 40th Anniversary with a gala lunch at 99 on York. Photos to follow soon.
Supporting the Scleroderma Community During COVID-19:
Partnering with the Scleroderma Patient-centered Intervention Network
The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of people living with scleroderma, healthcare professionals, and researchers from countries around the world who are working together to develop and share support programs for people with scleroderma.
With funding support from Scleroderma Australia, the Scleroderma Association of New South Wales, Scleroderma Victoria, Scleroderma Queensland and patient organizations from around the world, SPIN has launched its SPIN-COVID-19 Study and the SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program.
The SPIN-COVID-19 Study will examine the experiences of people with scleroderma during COVID-19 with a focus on mental health and well-being. SPIN-CHAT is a program to support people with scleroderma as they face isolation at home during this crisis and other concerns related to their health and well-being. SPIN-CHAT is a 4-week program with 3 videoconference group sessions a week that provide (1) engagement and fun activities; (2) education from experts on staying connected and healthy management of information, managing worry and anxiety, moving your body at home and other strategies to support health and well-being; and (3) mutual support among participants. Groups of 8 eligible participants, along with a trained group leader, will be formed to have fun, learn and support each other over the course of the 4-week program. People interested in participating can click here: https://survey.co1.qualtrics.com/jfe/form/SV_9pEX6I6Lo6t0fBz. People who participate in SPIN-COVID-19 and complete all study measures will be eligible for a lottery – 3 participants will win a trip to a national or international scleroderma patient congress in 2021.
In addition to its work during COVID-19, SPIN works on an ongoing basis to develop online tools for people with scleroderma. The SPIN-HAND Program, which is an exercise program designed to improve hand function has been tested in a clinical trial and will be available free-of-charge via SPIN’s website (www.spinsclero.com/). Keep your eyes out for its release in April!
SPIN is always looking for volunteers to work with its research team on research studies and developing programs for people with scleroderma. If you are interested and able to commit the time, you can email SPIN at spingeneral@gmail.com to learn how to apply.
Scleroderma and the NDIS
Finding it difficult to negotiate the NDIS?
CLICK HERE to read an article
by accessibleaction.com
regarding this process.
Please note:
The Scleroderma Association of NSW Inc. is in no way affiliated with the organisation, Accessible Action. The information provided in this link is for your information only. The Scleroderma Association of NSW Inc. accepts no responsibility for the correctness of this information.
Click on the ndis logo above
for details about this scheme.
CORONAVIRUS COVID-19 - ANNOUNCEMENT
We find ourselves in unfamiliar circumstances currently in our Nation and Worldwide.
As such, our Association, Scleroderma New South Wales, has decided to cancel our monthly Support Group Meetings until further notice. This decision has been taken in view of the Public Health Protocols now being put into place by the Federal and State Governments. Our Seminar planned for Saturday 27 June 2020, will also be postponed until a date in the future. It is with regret that this action has been necessary. Please be assured we are still here for you should you need advice, information, or just a friendly supporting voice at the end of the phone. Our committee member Fran, (0419 361 045) is happy to speak with you, as am I. Our office will still be open, but on a more limited basis. We will still publish our May Newsletter and keep you updated on “what’s new” with Scleroderma. Do follow all the hygiene and risk aversion recommendations and keep safe in your own environment, as we all come through this time safe and well.
Best regards to you all.
Marilyn Singer OAM
President – Scleroderma NSW
0414 390 449
2020 Support Group Meetings
Please note:
Until further notice all Support Group Meetings have been cancelled.
Commencing February 2020 we will be meeting at a NEW venue:
Eternity Cafe
827-839 George Street, Sydney
The cafe is situated opposite the Concourse Central Railway Station
Meetings will commence at 12 noon.