Welcome to Bits and Pieces. Many of you know that I have been fortunate enough to travel over the past month and to make it extra special, my time was spent with my youngest son. How lucky am I to have had that uninterrupted time in places full of new shared experiences. I know we will laugh about many things together and reminisce over the years to come.
While much of my time away brought wonderful yet expected experiences, there were lots of unexpected bonuses. How great to have discussions about how to change the world with someone without the barriers we build in as we age. How great to have your perspective challenged! It was a wake up call for how cynical and disappointed we can become, how its easy to be weighed down by the ‘realities’ and lose the possibilities. It was a reminder that we need to harness and optimise the thinking of our younger generations. And not just our younger generations, we need to invest in diversity of thought, to explore diverse views and experiences, to be open to innovative approaches and collaborations.
It’s been a hectic time since I returned to the GSNV, it seems like we are in full throttle to see off 2022 and to start afresh in 2023. I hope you will join us for our annual ‘Practical Wellness’ events throughout October. The GSNV will publish our year in review at the end of the year and November Bits and Pieces will share GSNV good news stories. I’d like to start this now by giving a special shout out to the Ageing with a Rare Disease Working Group. This group has been exploring the issues of ageing with a genetic, undiagnosed and rare disease and also parents with ‘children’ who are ageing with a genetic, undiagnosed and rare disease. The working group is working towards delivering a white paper that explores the issues and develops some recommendations.
Our December edition of Bits and Pieces will showcase your good work, so please share your stories with us via email info@gsnv.org.au Together we can inspire each other and acknowledge the incredible work of the support sector. Thank you for all that you continue to do.
Stay safe and well, looking forward to hearing from you.
GSNV VOLUNTEERS READY FOR ACTION!
The GSNV has recently onboarded 38 new volunteers and now has a pool of over 45 individuals keen to support organisations and groups working with genetic, rare, undiagnosed diseases.
Our new volunteers come with a multitude of skills and attributes from data and analytics to social media and communications and all are studying in the field of genetics.
If you are keen for some additional support, please send through your information and details of the support required to Sammy.bowden@vcgs.org.au
This free program provides a Telehealth nurse who can provide information and links to practical supports for the genetic, undiagnosed and rare communities within Australia.
For more information and to book a time to talk with her, please click here and complete the online booking form.
These resources have a point of difference by developing an understanding of the ‘lived experience’ of genomic medicine and the key message of the potential of personal empowerment in health and wellbeing decision making. This program is designed to complement interdisciplinary studies, including study design from science, biology and humanities.
The purpose of the databases is to facilitate communication with healthcare providers, connecting with others, and providing newly diagnosed families a place to start. Our mission is to make it easier to find relevant support groups and rare disease professionals, including information and resources about rare diseases.
Developed with consumers from the community including health professionals and those with lived experience of a rare disease, the vast majority of contributors agreed that they believed it would be beneficial for health care professionals and individuals with lived experience to have access to such a database and that it would help promote awareness of conditions, link healthcare professionals with support groups where they could provide information and support and contribute to a more holistic approach to healthcare.
JOIN HERE as a provider, health professional or patient support group
The objective of the Westpac Social Change Fellowship is to create positive social change in Australia by investing in people who have the drive, the commitment and innovative ideas to improve the wellbeing of Australians.
Further information can be found here.
AbbVie Funding Opportunity
AbbVie funding closes 8th October and will consider grant requests for financial support for initiatives that include:
Healthcare education events or initiatives, disease awareness activities, production of education materials and fundraising activities
Further information can be found here
The GSNV in partnership with some amazing volunteers, has established a Grants Support Team to provide guidance, support and assistance to support groups in applying for funding applications to better support their group and community.
If your support group requires assistance with writing a funding submission, pulling data to support an application or simply needs some guidance in how to draft an application, please contact our volunteer pool via the Grants Support Team email GSNVGrants@gmail.com.
The GSNV Margaret Sahhar Grant has been established to assist a support group with a significant boost allowing them to serve their communities by delivering on a pressing need or deliver an important benefit.
In the spirit of Margaret Sahhar, we encourage collaboration, holistic approaches, short and long term benefit and consideration and evaluation.
DGR Status is not required for GSNV Small Grants. Look out for more information in the next few months!
WELCOME EMILY JOHNSONOUR INTERN FROM THE USA!
“Hi everyone! My name is Emily and I will be interning at the GSNV until the end of November. I earned my bachelor's degree in Genetics & Genomics from the University of Wisconsin - Madison in 2020. After completing an exchange semester in 2019 at Macquarie Uni in Sydney, I have been trying to come back to Australia ever since! I am most interested in maternal and infant health, specifically in rural and First Nations populations. In the future, I want to attend medical school (hopefully in Australia) to work directly for these populations. While on this internship, I look forward to working on projects about the Newborn Screening Panel and the GSNV’s Inclusion Efforts. Lovely to be working with you all!”
We are responsive to a fast changing complex environment; we recognise the importance of, and seek to facilitate, a broad consumer voice in genetic health. We acknowledge the gap in existing support for many rare, undiagnosed and genetic conditions and continue to work to bridge this gap through education, advocacy and support.
By choosing to make a donation to the GSNV, you will be supporting people living with genetic, undiagnosed and rare conditions and those who support them, including families and support groups, working with health professionals, social service supports, and the broader community to deliver outcomes where people can flourish and live their best lives.
