Fundraisers
It being our first pandemic, we weren’t sure what to expect from our usual fundraising activities.
But, thanks to our volunteers and supporters, we were able to host a number of outrageously successful fundraisers.
We held our Shine like a Sunflower campaign to raise awareness of scleroderma and collect funding for research, lighting up landmark buildings across the country.
Another massive achievement was the Shine Bright Gala with Leesa Pennicott.
This night of dining and entertainment raised an incredible $37,000 for the Harrison Pennicott Scholarship for PhD research on scleroderma.
Meanwhile, we could only laugh at how our Comedy for a Cause event had to be rescheduled three times due to lockdowns.
But we look forward to having the last laugh this December. Stay tuned to our social media for events this coming year.
Education
If there can be a silver lining to the isolation of the last financial year, it might just be the community’s increasing access to remote events.
This year we launched our Virtual Education Sessions online, with the aim of empowering scleroderma patients to learn more about self-care.
In these monthly sessions, an expert guest speaker would chat with attendees on topics ranging from how to manage Raynaud’s condition to getting know your legal rights.
Thanks to feedback from our community on how useful these sessions were, we’ll continue to run them this coming year.
Be sure to connect with us on social media or view our events page to stay in the loop.
Guests
We also took the opportunity at the Annual General Meeting to listen to two fantastic guest speakers.
Dr Laura Ross spoke about her PhD research into scleroderma and heart involvement called “Feeling Breathless in Scleroderma, is it all a matter of the heart?”
And Dr Wendy Stevens spoke about “Covid-19 Vaccine, Third Primary Dose and Boosters.”
Dr Stevens also spoke about a new antifibrotic drug about to undergo clinical trials.
If you have diffuse scleroderma and it’s been less than five years since diagnosis, you could be eligible to participate. Contact Wendy Burnside, our new scleroderma nurse, at wendy.burnside@svha.com.au.
Research & Health
It was a joy to reflect on the impact we also made in the areas of research and health funding.
We poured $35,000 into the University of Melbourne’s research into gut health in scleroderma.
We also set about replacing our two resigning scleroderma nurses, welcoming Wendy at St Vincent’s Hospital, and continuing our hunt for the perfect candidate for Monash.
Our people
Another wonderful surprise that put a bow on the end of a dramatic year was the increase of our Scleroderma Vic members by 41 to a total of 345.
And as we reflected on our year’s achievements, we said a big thank you to all of our volunteers, especially the committee members, for their tireless work.
We took a moment to acknowledge the sad passing of Judy Browning, committee member and Bendigo Support Group leader.
Although Bruce Mannion and Bridget Naughton stepped down as committee members, we would like to thank them for their efforts.
This year, our office bearers and committee will be:
Office bearers
President: Amanda Lawrie-Jones
Vice President: Louise Inglese
Treasurer: Iain Pizzey
Secretary: Jennene Caton
Ordinary committee
Miriam Tawadros
Jenny Banwell
Mark Langhorn
Thank you
It may have been one of the most challenging years our community has had to face. But 2020-2021 has proved to be a testament to our resilience and a source of inspiration for all that we can achieve in future.
On behalf of Scleroderma Victoria, we’d like to thank everyone for their support and we look forward to an even brighter year to come.